A HIGH-PERFORMING SYSTEM FOR WELL-CHILD CARE: A VISION FOR THE FUTURE David Bergman, Paul Plsek, and Mara Saunders October 2006 ABSTRACT: Standardization of well-child care services is intended to ensure that families receive core services and key information. But standardization also encourages a “one-size-fits-all” approach that subjects many families to unnecessary office visits. At the same time, many children at risk for physical, developmental, or behavioral problems fail to get needed services due to time and resource constraints. This report presents a vision for a high performing system of well-child care and a guide for future policy and research efforts. Based on their extensive research, the authors conclude that an ideal system would be characterized by advanced access to services, team- based care, individualized developmental and behavioral screening, care coordination through a medical home, electronic health records, and tools for information and knowledge transfer. Some reforms are ready to be implemented, while others would require additional resources, new technology, and/or policy changes. Support for this research was provided by The Commonwealth Fund. The views presented here are those of the authors and not necessarily those of The Commonwealth Fund or its directors, officers, or staff. This report and other Fund publications are available online at www.cmwf.org. To learn more about new publications when they become available, visit the Fund’s Web site and register to receive e-mail alerts. Commonwealth Fund pub. no. 959. CONTENTS List of Tables and Figures................................................................................................ iv About the Authors........................................................................................................... v Executive Summary........................................................................................................ vi Introduction .................................................................................................................... 1 Methodology................................................................................................................... 4 Issues and Trends in Pediatric Practice and Well-Child Care............................................ 6 Changing Epidemiology ............................................................................................ 6 Technology and Innovation ....................................................................................... 8 Racial and Ethnic Disparities.................................................................................... 10 The Increasing Prevalence of Women...................................................................... 11 Trends in Financing ................................................................................................. 11 International Models ................................................................................................ 12 A High-Performing System for Well-Child Care ........................................................... 14 Access to Needed Services ....................................................................................... 14 Team Approach ....................................................................................................... 14 Individualized Developmental and Behavioral Services............................................. 15 Care Coordination and the Medical Home .............................................................. 15 Electronic Health Records ....................................................................................... 16 Information and Knowledge Transfer....................................................................... 16 Recommendations to the Field ...................................................................................... 17 The Experience of the Patient.................................................................................. 17 The Microsystem ..................................................................................................... 18 The Health Care Organization................................................................................. 19 The Environment .................................................................................................... 20 Conclusions ................................................................................................................... 21 Notes............................................................................................................................. 23 Appendix A-1. List of Journal Articles Reviewed........................................................... 27 Appendix A-2. Summary of Literature Review.............................................................. 38 Appendix B. Well-Child Care Scenarios ........................................................................ 48 Appendix C. Well-Child Care Change Ideas: Readiness for Implementation ................. 58 iii LIST OF TABLES AND FIGURES Table ES-1 Well-Child Care Change Ideas: Readiness for Implementation ................... xi Figure 1 Pediatrician Recognition of Developmental and Behavioral Problems .......... 1 Figure 2 Child Health Care: Burden on Parents ......................................................... 2 Figure 3 Parents Want Child-Rearing Information from Child Health Care Providers ........................................................................ 3 Figure 4 Time Spent Providing, Arranging, or Coordinating Care for Children with Special Health Care Needs, per Week.............................. 7 Figure 5 Physician Use of Electronic Technology Could Be Expanded ...................... 8 Figure 6 Percent of People Who Have Searched Online for Health Information ........ 9 iv ABOUT THE AUTHORS David Bergman, M.D., is an associate professor at Stanford University School of Medicine. His research has been focused in the areas of practice guidelines and quality improvement, the redesign of clinical services, and the use of Web-based patient portals to treat chronic illnesses and the resulting impact on doctor–patient communication. Dr. Bergman serves as chairman of the board of the National Initiative for Children’s Healthcare Quality and is a former chairman of the American Academy of Pediatrics Committee on Quality Improvement. He is also a member of the executive committee for Child and Adolescent Health Measurement. Dr. Bergman remains clinically active and is actively involved in providing well-child care to children. He received an M.D. from the University of Illinois School of Medicine. Paul Plsek, M.S., works as a consultant on improvement and innovation for complex organizations. His health care clients include the United Kingdom’s National Health Service, Kaiser-Permanente, the Veterans’ Health Administration, the SSM Health Care System, the Virginia Mason Medical Center, and the Institute for Healthcare Improvement. He is the chair for innovation at the Virginia Mason Medical Center in Seattle; a former senior fellow at the Institute for Healthcare Improvement; an active investigator in research projects with the Vermont-Oxford Network, Agency for Healthcare Research and Quality, and the Institute of Medicine; and a conference speaker. Before starting his own firm, he was director of corporate quality planning at AT&T. He is the author of dozens of peer-reviewed journal articles and three books. Mr. Plsek received an M.S. in electrical engineering from the Polytechnic Institute of New York. Mara Saunders is a registered nurse, working on the transplant unit at the University of California, San Francisco (UCSF) Medical Center. She has an undergraduate degree from the University of Pennsylvania, where her studies focused on health disparities in underserved communities. Ms. Saunders has conducted research on reproductive health among women in the Dominican Republic, and has worked previously with Dr. Bergman on the asthma telemedicine project, which examined the efficacy of using a telemedicine link in public elementary schools to increase health care access for children with asthma in an underserved neighborhood in San Francisco. She is currently completing her master’s degree in advanced community health and international nursing at UCSF. v EXECUTIVE SUMMARY Well-child care—the primary means of providing developmental and preventive services—is ripe for change. Despite taking great pains to be efficient providers of care, may pediatric practices struggle to fulfill the needs and expectations of families with young children. One problem is the standardization in the way well-child care is both provided and reimbursed. While intended to ensure that families receive core services and key information, standardization tends to encourage a “one-size-fits-all” approach that subjects many families to unnecessary visits. At the same time, many children who are at risk for physical, developmental, or behavioral problems fail to get needed services due to time and resource constraints. Much of physicians’ time is spent on providing services that could be better performed by other health professionals, infringing on time they have available to care for children with complex medical problems. Because of the poor design of well-child care, providers often fail to adopt evidence-based practices, such as the use of standardized developmental screening. These conditions lead to waste, lower-quality care, and frustration for all parties. We need a high-performing system of well-child care designed to optimize the development of young children. New technologies and innovative clinical practices can provide the tools needed to create it. This will require transformational change; we will not be successful through efforts at the margin. In this report, we articulate changes needed to realize a high-performance system for the delivery of well-child care. We intend for it to serve as a template for implementing changes in clinical practice and a guide for further policy and research efforts. To develop key concepts and strategies, we relied on Berwick’s concept of a “change idea,” or an idea that can lead to improved performance but must be detailed and adapted for a given situation.1 We used three approaches to develop change ideas: • reviewing the current literature to assess key findings in well-child care research and identify important trends; • posing discussion questions on listservs for general and academic pediatricians to generate new ways of providing well-child care (e.g., pediatricians were asked to respond to the question ‘How would you deliver WCC if there were no pediatric offices?’ as a way to stimulate creative thinking); and • convening family physicians, nurse practitioners, child health advocates, researchers, grantmakers, and parents at a conference to discuss best practices and innovations. vi We then developed models of high-performing practice for various well-child care scenarios. The scenarios were: 1. an urban setting serving a racially and ethnically diverse population; 2. a rural setting with low- to moderate-income patients who travel long distances to office visits; 3. a suburban, middle-class setting; 4. a system serving children with special health care needs; 5. a health care system that provides reimbursement for home health visitors; 6. a system with lowest possible costs, while maintaining acceptable quality; 7. the most innovative system (i.e., if you did this, people would say “Wow!”); 8. the most technology-driven system, not centered on the physical office. Then, drawing on the best change ideas developed for these eight scenarios, we created an overall vision for ideal well-child care. Table ES-1 organizes the change ideas according to those ready for immediate implementation; those requiring additional resources; and those requiring the use of new technology or policy development. The discussion below outlines the key elements of a high performing system for well-child care. Advanced Access to Care In ideal well-child care, families would be able to access health services and consult with their providers in ways that work for them. Access to care could take many different forms, apart from office visits. • Remote encounters would be used to enhance communication between families and health care teams for situations that do not require office visits. These encounters could be created through the use of secure messaging, Web-based virtual visits, videoconferencing, or other telehealth tools. • Systems would be implemented to allow parents to make same-day appointments, or appointments at desired times in the future. • Home visitors would be used to deliver well-child care for high-risk children. • Developmental and educational assessment could be performed in schools, day care centers, or community and religious centers. Telehealth encounters could be used in these settings to provide access to child development expertise. vii Team-Based Care In a high-performing well-child care system, a multidisciplinary team of health care professionals would offer a broad range of services to families. • This team could include developmental and behavioral specialists, care coordinators, and home visitors. The membership of each team would be tailored to meet the specific needs of children and families. Some of the team members could be shared among multiple practices. • Children with special health care needs would have access to a care coordinator. This individual would help families navigate complex systems, interface with payers, and develop a comprehensive plan that encompasses education and socialization as well as health care. • Parents would be part of the health care team, helping to plan and deliver care and assess well-child care outcomes. Individualized Developmental and Behavioral Screening Ideal well-child care would entail continuous developmental surveillance to detect and address physical, behavioral, or learning problems and optimize child health. • Health care professionals would assess children’s development and behavior using valid screening instruments. The results of the screening would be available to clinicians prior to well-child care visits in order to identify children at risk and structure visits to meet families’ expressed needs. • Developmental and behavioral screening instruments that have been validated among different minority groups would be used for racially and ethnically diverse populations. • Every newborn would be screened for biological, psychological, and social risk factors and stratified into groups according to risk. This could take place in the newborn nursery or during the first few well-child care visits. • The results from behavioral and developmental screenings would be used to customize the content of the well-child care visit and include appropriate members of the health care team. Cultural Beliefs and Practices of Racial and Ethnic Minority Groups An ideal well-child care system would accommodate patients’ communication needs as well as their preferences, values, and expectations. viii • Children and families would have access to language and other cultural interpretation services in cases where English is not the language spoken at home. • Health care organizations would consider providing some components of well-child care in sites such as day care centers, churches, or homes. Some families might find community settings more familiar or comfortable than health clinics or physician offices. • Health care teams would include members who are familiar with the beliefs and practices of their patient populations. Care Coordination in the Context of a Medical Home In an ideal well-child care system, each child would have a medical home to coordinate care among multiple pediatric specialists, schools, and community agencies. • Pediatric clinicians would form partnerships with community and government agencies. Such partnerships could focus on population-based health initiatives, such as obesity prevention. • For children with special health care needs, community pathways would be developed to bring together the health care system, schools, and other community agencies and provide a clear path for children who need a wide array of services. • Videoconferencing would be used to enhance care coordination between families and health care providers. Knowledge Transfer and Electronic Health Records To care for their children and participate in the medical decision-making process, families need access to accurate information and effective systems for knowledge transfer. In an ideal well-child care system: • Health care organizations would commit to implementing electronic health records (EHRs) and eliminating costly and inefficient paper transactions. • Each parent/child would have a personal health record (PHR) that was closely integrated with his or her EHR. Through the PHR, each family would be able to engage in secure electronic communications with their clinicians, view test results and visit summaries, input health information, and share information with other health care professionals. • Families would have access to a repository of information about child development and behavior, health promotion, and illness that is evidence-based and up to date— ix a “Bright Futures” for parents.2 The repository would be appropriately indexed so that distinct modules could be linked to PHRs. • Health care information would be integrated across communities, states, and the nation using common standards for electronic databases and tools. • Creation of regional health information organizations would be encouraged. These organizations would be able to integrate information across providers to create a community health record and a regional and national database to facilitate disease surveillance and outcomes assessment. Health Care Financing Effective well-child care would depend on a health care financing system that provides universal access to health care for children. • Ideally, the United States would pass legislation to provide universal health care coverage for children. Because the health of the child is often dependent on the health of the family, this coverage should be extended to mothers and fathers. • Short of universal health coverage, intermediate steps should be implemented to provide: 1) appropriate reimbursement for transactions other than face-to-face encounters; 2) levels of reimbursement based on the degree of risk of the child and family (i.e., tiered capitation); and 3) reimbursement for the work of non-physician members of health care teams, such as mental health professionals and child development specialists. Conclusions Well-child care as it exists today is in need of transformational change. The current system does not meet the needs of families or the aspirations of providers. This report puts forth a template for a future direction. To move forward, we will need to engage in a stepwise process to bring about incremental and transformational change. We will not be successful unless we pair changes in practice with changes in reimbursement. In particular, provider incentives need to be aligned to promote best practices in preventive and developmental care. Effecting change will also require strong leadership from organizations and agencies such as the American Academy of Pediatrics, the American Academy of Family Practice, and the Maternal and Child Health Bureau. x Table ES-1. Well-Child Care Change Ideas: Readiness for Implementation Change Ideas Requiring Change Ideas Ready for Change Ideas Requiring New Technology or Implementation Additional Resources Policy Development Assign children into risk Provide advanced access; Give parents access to vetted categories and customize their ensure that visits can take Web sites; automatically direct screening and developmental/ place on the day requested them to sites from electronic preventive services or personal health records Focus well-child care visits Use public health nurses or Create interactive health care with the help of structured other child health information programs to teach assessments prior to the visits professionals to make home child development and health visits promotion skills; possible partnerships with media companies Use of parents as consultants Use multidisciplinary teams Send group e-mails or text to answer questions and to ensure families are offered messages with health impart information broad range of services, information, e.g., allergy alerts including developmental and mental health services Enable parents of children Deliver screening and Install kiosks at places of with special health care needs developmental and employment or other central to partner with practices, preventive services at locations to provide participate in planning care preschools and day care information about community centers resources Pediatricians serve as Forge partnerships between Create electronic health consultants to schools, practices and communities records linked to regional community agencies, and agencies for population-based health information other settings initiatives, such as obesity organizations to track prevention outcomes and perform needs assessment Give parents customized Enable “one-stop shopping”: Use electronic prompts and calendars with schedule and co-location of health, mental reminders for clinicians and description of well-child visits health, education, and social parents to ensure appropriate (like tear-off tickets for services and timely well-child care mortgage payments or car maintenance) Set up specific office hours for Perform population-based Set up Web-based tracking/ behavioral and developmental screening in schools, monitoring systems linked to a problems churches, or community child’s electronic health agencies to identify health record, e.g., immunization care needs registry, specialty referrals, and disease management Use a care coordinator in Use a personal health record conjunction with team- derived from an electronic directed care health record xi A HIGH-PERFORMING SYSTEM FOR WELL-CHILD CARE: A VISION FOR THE FUTURE INTRODUCTION Current pediatric practice, especially the provision of developmental and preventive care services, is inefficient and out of step with the expectations and needs of many families with young children. In our current system, well-child care (WCC) is the primary means of providing developmental and preventive services to children. Well-child care accounts for nearly a quarter of pediatric visits, and more than half of all visits in the first year of life.3 In spite of this considerable allocation of time and resources, many children do not receive the care they need. Often, infants and children are not screened for conditions such as lead poisoning, iron deficiency anemia, and developmental and behavioral problems. Many children begin school at a disadvantage because they have unrecognized physical, behavioral, or learning problems (Figure 1). Figure 1. Pediatrician Recognition of Developmental and Behavioral Problems Percent of children Identified Prevalence 15 13 11 10 8.7 5.7 5 0 Preschool behavioral problems School-age behavior problems Sources: J. V. Lavigne et al., “Behavioral and Emotional Problems Among Preschool Children in Pediatric Primary Care: Prevalence and Pediatricians’ Recognition,” Pediatrics, Mar. 1993 91(3):649–55; E. J. Costello et al., “Psychopathology in Pediatric Primary Care: The New Hidden Morbidity,” Pediatrics, Sept. 1988 82(3 Pt. 2):415–24. Pediatric practitioners frequently fail to provide services that are known to promote healthy development. While most families receive some health promotion and anticipatory guidance, evidence suggests that these services fail to address the concerns of more than half of parents, and poor and minority families are less likely than higher- income, white families to say their concerns have been addressed.4 The shortcomings of 1 WCC delivery are compounded by the demanding schedule of WCC visits for young children, which can prove burdensome for families. Data from the Medical Expenditures Panel Survey show that, at best, only half of children complete the recommended number of visits by age 2 (Figure 2).5 Figure 2. Child Health Care: Burden on Parents Annual visits 6 Total child health care visits Recommended well-child visits 5 Well-child visits 4 3 2 1 0 <1 1–2 3–4 5–6 7–11 12–18 Ages of children (years) Source: Medical Expenditure Panel Survey, Household Component, 2000. Often, families are confronted with a confusing set of messages about their children’s health and development. Many parents turn to their child’s primary care physician to help them understand and cope with the challenges of parenthood (Figure 3). But is our system of WCC up to the task? While there has been mounting pressure to improve it, substantial change has eluded us to this point.6 Clinicians are handicapped by an outdated WCC schedule, in which the frequency of visits is dictated by immunization and health screening instead of the developmental and psychosocial needs of the family. The rapid rise in the number of health promotion and disease prevention services has created greater responsibilities for clinicians, leaving them with insufficient time to provide the full range of WCC services.7 2 Figure 3. Parents Want Child-Rearing Information from Child Health Care Providers Percent of parents who want more specific information on: 60 54 42 41 40 30 23 20 0 How to help How to Toilet training Sleep Crying—what learn discipline patterns to do Source: K. T. McLearn et al., “Listening to Parents: A National Survey of Parents with Young Children,” Archives of Pediatrics and Adolescent Medicine, Mar. 1998 152(3):255–62. Because WCC follows a “one-size-fits-all” approach, many families are subject to unnecessary visits, while children with biological, psychological, or social risks do not receive the services they need due to time and resource constraints. Much of physicians’ time is spent on providing services that could be better performed by other health professionals, infringing on time they have available to care for children with complex medical problems. Because of the poor design of WCC, providers often fail to adopt evidence-based practices, such as the use of standardized developmental screening. These conditions lead to waste, lower-quality care, and frustration for all parties. It is an opportune time for change. Recent research shows that interventions in the primary care office can have a significant impact on the effectiveness, patient- centeredness, timeliness, and efficiency of child development and health promotion practices.8 Innovative new technologies can support health promotion and education and facilitate services that do not require face-to-face visits with providers.9 The high penetration rate of home computers and Internet access facilitates e-mail communication between families and providers and Web-based educational programs that enable parents to be active participants in their child’s care.10 Efforts to redesign physician practices have improved access to care, created shared group visits, and remodeled primary care offices into “medical homes” for children.11 Collaboration with new health professionals in the areas of child development and health promotion has markedly increased parent knowledge and satisfaction with care and improved some of the key outcomes of WCC.12 3 Moreover, pediatricians are cognizant of the need for change in how WCC is delivered and who delivers it.13 Significant improvements in WCC will require a stepwise process that builds on the current infrastructure of pediatric practice.14 Effecting change also will require strong leadership and the involvement of organizations and agencies such as the American Academy of Pediatrics, the American Academy of Family Practice, and the Maternal and Child Health Bureau. In this report, we articulate changes needed to realize a high-performing system for the delivery of well-child care, drawing on the ideas of leaders in child health care, including pediatric practitioners and family advocates. We intend for the report to serve as a template for implementing and evaluating change in clinical practice and a guide for further policy and research efforts. The report is divided into four sections. In the first, we discuss the methodology we used to develop our recommendations. In the second, we outline important trends affecting preventive and developmental services. In the third section, we present a template for ideal well-child care and in the final section we offer recommendations to the field, presented from the perspectives of families, the microsystem, the health care organization, and the broader environment. METHODOLOGY The project aimed to consolidate information on the best office practices in well-child care. To generate key concepts and strategies, we relied on Berwick’s concept of a “change idea,” or an idea that can lead to improved performance but must be detailed and adapted for a given situation.15 For example, “use group visits” is a testable change idea. The details for applying it to a particular context and patient population can be determined, and the outcomes of applying it can be measured. We used three approaches to develop a set of change ideas: • reviewing the current literature to assess key findings in WCC research and important trends affecting the future of WCC; • posing discussion questions on listservs for general and academic pediatricians to generate new ways of providing WCC (i.e., pediatricians were asked to respond to scenarios such as: “How would you deliver WCC if there were no pediatric offices?” as a way to stimulate creative thinking); and 4 • convening child health experts and parents at a conference to discuss best practices and innovations. For the literature review, we used a structured Medline search as well as a manual review of key articles and monographs to identify important findings in WCC. The articles reviewed are listed in Appendix A-1 and summarized by topic area in Appendix A-2. To initiate discussion of new ways of providing WCC among a diverse group of clinicians and other professionals, we joined the Ambulatory Pediatric Association and the Pediatric Research in Office Settings (PROS) listservs. We posted the following scenario to the listserv discussions: “A strange disease had shut down all but one pediatric practice in New York City and the pediatrician was challenged to create a health care system that would continue to provide services to children.” Such scenarios, called “stepping stone” provocations, follow the principle that innovative approaches are often born out of crisis situations.16 Members of the listservs were asked to respond by suggesting changes or innovations that would address the hypothetical crisis. Finally, we convened WCC experts at a two-day conference in Chicago in March 2005. The diverse group of 29 participants included physicians, nurse practitioners and nurses, leaders from child advocacy groups and national programs, researchers, grantmakers, and parents. The meeting was used to generate consensus on a set of change ideas that would begin to define ideal well-child care. The meeting agenda was designed to review the current approach to WCC, provoke original thinking, harvest the best ideas, and identify key themes for further development.17 An expert on creative problem-solving led a series of exercises. Participants were asked to consider how things are traditionally done in health care and other industries. They were than asked to set aside tradition as well as technological or resource constraints in order to generate innovative change ideas. Participants were given 10 votes each and asked to nominate ideas they thought would have the most positive impact on WCC. A list of the change ideas that received at least five votes can be found in Appendix C. Participants were asked to choose from a selection of eight scenarios. All those choosing the same scenario formed a small group and were asked to describe an ideal well- child care system for one of the following scenarios: 5 1. an urban setting serving a racially and ethnically diverse population; 2. a rural setting with low- to moderate-income patients who travel long distances to office visits; 3. a suburban, middle-class setting; 4. a system serving children with special health care needs; 5. a health care system that provides reimbursement for home health visitors; 6. a system with lowest possible costs, while maintaining acceptable quality; 7. the most innovative system (i.e., if you did this, people would say “Wow!”); 8. the most technology-driven system, utilizing an electronic health record, remote sites accessed through telehealth, and Web-based interactions between providers and families. To encourage innovation, groups were instructed to avoid premature judgment and set aside constraints of practicality or costs.18 Each group presented their ideal system for a particular scenario, and the presentations were videotaped and transcribed for later analysis. Participants then reviewed the videotapes to identify common change ideas and recurring themes. The well-child care systems for each of the eight scenarios are described in Appendix B. ISSUES AND TRENDS IN PEDIATRIC PRACTICE AND WELL-CHILD CARE To conceptualize a high-performing WCC, we considered six trends that will affect the future of well-child care. These include: the changing epidemiology of pediatric practice; emergence of new technology; impact of racial and ethnic disparities; greater prevalence of women in pediatric practice; changes in health care financing; and international models. Changing Epidemiology The past 50 years have seen marked change in the epidemiology of pediatric practice. There has been a significant decrease in hospitalizations for acute conditions and a concomitant rise in the prevalence of chronic conditions.19 In part, this shift is due to advances in disease prevention, increased survival rates of children with chronic conditions, and the growing prevalence of children with disabilities secondary to increased rates of very low birth weight infants and the associated neonatal morbidity.20 Today, approximately 75 percent of total health expenditures are designated for children with chronic and disabling conditions.21 6 A recently published survey found that children with special health care needs (CSHCN) comprise 12.8 percent of the population under the age of 18.22 Yet, a significant proportion of these children do not receive the care they need: 57 percent of parents of CSHCN do not feel they are partners with their health care providers in important medical decisions and 48 percent feel they do not receive coordinated and comprehensive care. Just more than half (51.6%) report that their children are consistently screened for special health care needs in a timely manner.23 Today’s pediatric patients are divided into children who are essentially well and those who have special health care needs.24 This dichotomization must, by necessity, lead to changes in the way WCC is delivered. Many children are not “well” in the traditional sense, but still require services to ensure optimal development and disease prevention. Some surveys have shown that nearly one-third of CSHCN have significant behavioral problems and over two-thirds do not receive appropriate care.25 Meeting the needs of CSHCN will require a robust health care team, including nurse practitioners and child development specialists. Increasingly, physicians will devote more time to the care of CSHCN with much of WCC for “well children” done by other members of the health care team. The increased number of CSHCN will pose challenges as these children make the transition into adulthood. Child health care specialists will need to work with their adult medicine colleagues as well as families to ensure appropriate living and working conditions for young adults with special health care needs. Figure 4. Time Spent Providing, Arranging, or Coordinating Care for Children with Special Health Care Needs, per Week 2–5 hours 22.3% 1 hour or less 6–10 hours 57.5% 6.7% 11+ hours 13.5% Note: Insufficient number of respondents said “1–2 hours” for inclusion in the figure. Source: U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, The National Survey of Children with Special Health Care Needs Chartbook 2001 (Rockville, Md.: U.S. DHHS, 2004). 7 Technology and Innovation New and emerging technologies offer opportunities to improve care delivery systems and, ultimately, health outcomes. The digital capture of patient records, Web-based access to health care information, and electronic communications between families and medical experts will enable children and families to better care for themselves and allow health care providers to be proactive and efficient in providing individualized care.26 The adoption of EHRs, however, remains slow because of cost and lack of incentives for practitioners.27 The current model of EHR adoption predicts that if current level of commitment remains the same, it could take up to 18 years before EHRs achieve significant market penetration.28 Figure 5. Physician Use of Electronic Technology Could Be Expanded Percent indicating “routine/occasional” use All physicians 1 physician 2–9 physicians 10–49 physicians 50+ physicians 100 79 81 80 76 71 73 63 59 60 46 37 39 40 35 27 26 27 26 20 16 16 14 6 8 0 Electronic billing* Access to test Ordering of tests* Electronic medical results* records* * p < .01, Cuzick’s test for trend. Base: All respondents (N=1837). Source: Commonwealth Fund 2003 National Survey of Physicians and Quality of Care. Currently, there are about 9,750,000 pediatric-related Web sites.29 Finding information that is relevant to an individual child can be a daunting task. The development of electronic health records (EHRs) will give every child an individualized database, or personal health record (PHR). Parents will be able to readily access medical information about their child and pass on up-to-date information to their providers. Specific issues in a child’s PHR, such as normal behavior or developmental milestones, could be linked to online resources that have been vetted for accuracy, giving families state-of-the-art information customized to their child’s needs.30 The Pew Report on the Internet and American Life found that 80 percent of adult Internet users, or almost half of Americans over the age of 18, say they have researched at least one of those specific health topics at some point.31 8 Figure 6. Percent of People Who Have Searched Online for Health Information Demographic group Percent Women 82 Men 75 Ages 18–29 77 Ages 30–49 81 Ages 50–64 82 Age 65+ (n=51) 66 High school diploma 67 Some college 80 College degree 86 2–3 years online experience (n=66) 66 6+ years online experience 86 Dial-up connection at home 72 Broadband connection at home 87 Notes: N=537. Margin of error for the entire sample of Internet users is +/– 4%; margins of error for comparison of subgroups are higher. Source: Pew Internet & American Life Project November 2004 Survey. Web-based secure messaging is becoming an increasingly important way to provide families with information about developmental and preventive care issues. The asynchronous nature of the communication means that families can reach out when it is convenient for them, and providers can respond in a timely manner.32 With secure messaging, physicians will be able to share questions with other health care providers who may be able to offer additional expertise.33 For adolescents, the use of secure messaging provides a means of communicating confidential information to health care providers.34 Web-based programs can help families with CHSCN monitor chronic conditions and receive timely feedback about their child’s development.35 Telehealth—the use of electronic and telecommunications technologies to provide health information and to diagnose, treat, or follow up with patients at a distance—holds promise to improve access to WCC. It can, for example, be used to conduct developmental assessments in day care centers or preschools and provide access to expert care during WCC office visits.36 Telehealth tools also could be used to improve access to primary care for children in inner-city schools.37 The use of a shared EHR that is accessible to all health care providers, as well as children and families, has the potential to greatly improve care coordination.38 On a local level, having EHRs open to all health care providers makes it possible for them to access relevant health information and treatment plans. The membership of this “virtual health care team” could change to meet children’s particular and evolving needs. 9 Racial and Ethnic Disparities There is evidence that accommodating patients’ communication needs as well as their preferences, values, and expectations—providing what has been called culturally competent care—can increase the likelihood that families will seek care, adhere to medical regimens, and use emergency departments appropriately.39 Currently, children from racial and ethnic minority groups are less likely than white children to have a usual source of care or to see the same provider each visit.40 In addition, these children have fewer doctor visits, in spite of worse health status, and are less likely to receive preventive services.41 Cultural factors may also influence differences in expectations for aspects of care such as waiting time and negative perceptions of the quality of care, accounting for disparities in the primary care experience.42 While these findings can be explained in part by language barriers, this factor alone does not explain all of the variance in patient experience.43 With growing racial and ethnic diversity among U.S. children, such disparities will become more common without effective interventions. Efforts to reduce disparities will need to focus on: • Language: One of the most significant barriers in access to care and provider- patient communication is lack of language concordance with the primary care provider. Many families do not speak the same primary language as their providers; many other families share a common language with their providers but have low health literacy. Providing language services is thus an important way to address racial and ethnic disparities in the WCC experience. • Cultural Factors: Cultural factors in the preference and expectations for WCC can influence the clinical experience. For example, Asian Americans have higher expectations for receiving timely care and as a consequence may perceive this aspect of care more negatively. It remains to be seen whether incorporating elements of cultural competency—such as provider knowledge of the health belief of different ethnicities—into the delivery of primary care will significantly reduce racial and ethnic health disparities. It is, however, an important avenue of work to pursue. • Health Systems Factors: Innovations such as being able to provide appointments when requested (i.e., open access) or cultural competency training for providers may improve the quality of primary care for minority children. It will be important to pay close attention to changes in health care financing, such as health savings accounts, to see if they adversely affect ethnic and minority children. 10 The Increasing Prevalence of Women Over the last 25 years, there has been a dramatic change in the gender distribution of the pediatric workforce. In 1980, 28 percent of pediatricians were women; by 2004, the proportion had risen to 55 percent.44 This trend is likely to continue, since 61 percent of current pediatric residents and fellows are women.45 These changes have contributed to an increase in the percentage of pediatricians working part time. In 1993, 24 percent of female all pediatricians worked part time; by 2004, the percentage of all female pediatricians working part time had increased to 43 percent.46 Compared with their male counterparts, female pediatricians are less likely to be Caucasian and more likely to be Asian or African American.47 They also are more likely to spend their clinical time in general pediatrics. In 2004, 76 percent of female pediatricians were in general pediatrics, compared with 65 percent of male pediatricians. Conversely, 35 percent of male pediatricians were sub-specialists, while only 24 percent of women were in sub-specialty care.48 Female pediatricians are also more likely than male pediatricians to work in suburban settings and less likely to work in rural or urban communities.49 To accommodate the growing number of pediatricians working part time, as well as the diminishing numbers of pediatricians in rural or urban settings, there will be need to be new systems to encourage the use of partnerships and pediatric health care teams to ensure continuous care. It might be possible to use information-sharing technology to enable pediatricians to work together to provide care. Health care teams might offer useful diversity of experience and expertise and lead to more comprehensive care, particularly in the areas of child development and mental health. The use of videoconferencing and other telehealth tools might lead to more effective use of pediatric sub-specialty care and improve access to such care for families who live far away from major medical centers. Trends in Financing The United States has experienced double-digit growth in health care costs over the past several years. Unless there are substantial changes to health care financing, this growth rate is likely to increase over the next 10 years. Employers are unwilling to pay more for their employees’ health plans. State governments, which fund Medicaid and State Children’s Health Insurance Programs, already spend more than 20 percent of their budgets on health care. Cost pressures are driving employers and insurance companies to consider new insurance products, including health savings accounts (HSAs).50 HSAs provide individuals or families with a defined contribution that goes into a savings account. Withdrawals are 11 made from this account to pay for health care services. HSAs are usually sold in conjunction with a high-deductible health plan. With HSAs, consumers are able to choose from a wide range of providers and institutions, using available information on quality performance and costs. HSAs in effect switch the accountability and financial risk from the health plan or insurer to the consumer, while keeping premiums at affordable rates. HSAs assume that the consumer will act rationally to choose only needed care from the best provider. Research, however, has shown that this often not the case.51 Consumers frequently make poor choices and often do not receive needed, evidence-based care. Arrangements such as HSAs combined with high-deductible health plans, which offer a defined contribution instead of a defined benefit, may lead families to defer well-child care in order to pay for sick care or chronic illness. Families may forgo aspects of WCC to have more money to carry over to the next year or cover acute care visits. The current system of fee-for-service reimbursement for WCC may work against innovation in clinical practice. When physicians are reimbursed for each WCC visit, they may be reluctant to shift some aspects of WCC to other health care professionals, even though these professionals may be better trained to perform certain tasks. Certain innovations, such as Web-based interactions between providers and families, are not reimbursed under such a system. Fee- for-service also does not account for the additional work needed for CSHCN, such as coordinating their care with medical specialists and community agencies. In order to realize cost savings through practice redesign, it will be necessary to develop payment models that support innovation while preserving physician income. Tiered capitation rates based on the biological and psychosocial risk status of a child is one possible model for reimbursement. International Models The United States is one of a small number of countries that uses board-certified pediatricians to deliver WCC.52 In Australia, the United Kingdom, and Sweden, “health visitors”—usually nurses with public health training—make home visits to deliver WCC. In the Netherlands, WCC is provided by physicians who complete an internship and three weeks of training in WCC. In many other European countries, preventive and developmental services are delivered in public clinics and through the use of home visits. If a child needs acute care, they are taken to an assigned practicing physician. 12 Across developed countries, the periodicity schedules for WCC vary greatly. In the U.K., experts have questioned the evidence supporting regular developmental screening or surveillance, suggesting that there be only three physician visits in the first year of life (newborn, eight weeks, and one year).53 In the U.K., health visitors currently provide much of the developmental and preventive care for children. Behavioral and developmental concerns are addressed through regular physician office hours. The Netherlands is at the other end of the spectrum, with 18 WCC visits in the first three years of life. The concept of the pediatric or family physician office as the “medical home” is not widely embraced in European countries. Instead, many systems seek to integrate health care and preschool services. Continuity of care is monitored through nationwide tracking systems. In many European countries, families may choose to go to a specialist, bypassing a referral from the primary care physician. In Sweden, for example, most parents understand that they go to a general practitioner if their child is acutely ill, a public health nurse for developmental services, and a pediatrician for complex medical problems. This system provides comprehensive, continuous care, without coordinating services in a pediatric practice or medical home. The international experience in WCC may offer a window into the future of WCC in the United States. As in many European countries, WCC may eventually be provided by non-physician health professionals in a variety of sites, such as health clinics or schools. All health information might be linked through a community health record. The greater use of other health care professionals to provide WCC might mean that physicians will need to assume different roles, such as attending to the care of the growing population of CSHCN. The wide variability in the periodicity schedule among different countries underscores the lack of a strong evidence base for this, or any visit, schedule. In the future, we will most likely see a range of periodicity schedules. Schedules might indicate which health care professionals should deliver care, and might be tailored to the biological and psychosocial risks of children and their special health care needs. Many countries, including the U.K. and Sweden, have designed their child care systems with the assumption that it takes more than good health to ensure optimal child development. In these countries, education, health, and social services are often co-located in order to provide integrated and accessible services. The community is seen as the “child development” home for children and families. The U.K. has developed models, or pathways, of care to identify children at risk and ensure they receive the complete spectrum of needed services. In this way, the medical home expands beyond the clinical 13 office and becomes integrated with other services in the community. In the United States, information technology could enable “virtual medical homes” that exist at the levels of the physician office, the community, and the country and coordinate care, surveillance, and outcomes assessment. A HIGH-PERFORMING SYSTEM FOR WELL-CHILD CARE The authors reviewed videotapes of the group presentations of what would constitute a high-performing systems of well-child under the different prescribed scenarios (e.g., a rural practice). They then used this information to construct written descriptions of high- performance care. Each of the scenarios describes a system of care that would best serve a particular patient population, geographic location, or condition for care provision. Using these different perspectives enabled the authors to view the change ideas through different lenses. The scenarios were built from the “bottom-up,” starting with the change ideas developed during the conference. The scenarios are described in Appendix B and the change ideas are described in Appendix C. The following discussion presents an ideal system of well-child care, drawing on the shared change ideas and common themes from the scenarios. Access to Needed Services In the ideal WCC system, families would have access to care when and where they need it. Families would be able to schedule same-day appointments, or name desired times. Aspects of WCC could be provided in locations other than clinicians’ offices, including schools, day care centers, community centers, and even shopping malls. For many families, WCC would be delivered in the home by home care visitors or public health nurses. This would improve access to care for families and enable health care providers to learn about children’s home environments (e.g., Who lives at home? What are the sleeping arrangements? Is it a safe environment?) and suggest opportunities for improvements. For some families, important advice, anticipatory guidance, and knowledge transfer could take place through secure messaging, videoconferencing, and other types of telehealth technology. Although care may be geographically fragmented in such a system, all relevant information would be accessible in a comprehensive electronic health record. Team Approach In the ideal WCC system, physicians would be part of multidisciplinary teams that provide a full spectrum of needed services. There would be flexibility in terms of the teams’ composition and size, depending on the needs of children, families, and communities. For 14 example, a health care team might need to include a pediatric specialist, school counselor, or community health worker to meet the needs of a particular child. The use of health care teams would give physicians more time to focus on children with special needs and complex medical conditions. Here again, teams would use electronic health records to coordinate care and share information among members. For CSHCN, much of WCC could be accomplished through the use of health visitors or public health nurses. There could also be mental health professionals or child development specialists working at physicians’ offices to help address developmental and behavioral concerns. E-mail, videoconferencing, and telehealth visits could improve access to care. Individualized Developmental and Behavioral Services One size does not fill all in the ideal WCC system. The services provided to each family would depend on the presence of biological and psychosocial risks, family experiences, the age of the child, and many other factors. Each child would be assessed at birth and stratified into different groups, according to their need. Low-risk infants with parents who had other children would receive a visit schedule that required less face-to-face time in the physician’s office; for many visits, they might see a nurse, rather than a physician, for immunizations and screening tests. Much of the needed anticipatory guidance would be accomplished via Web-based communications. High-risk infants and families would receive more intensive services and utilize an expanded team that might include social workers, developmental specialists, and community health workers. Pre-visit surveys that assessed the child’s development or psychosocial health would provide information that will help health care teams to tailor the visit and schedule the appropriate team members. Care Coordination and the Medical Home In the ideal WCC system, each child would have a medical home that would coordinate care among multiple pediatric specialists, schools, and community agencies. Each family would have a written, comprehensive care plan that outlined medications, treatments, needed monitoring, and conditions for which they should call or see their physician. The medical home would use community pathways as an important tool to help families navigate through a complex health care system. These pathways would articulate the sequence of needed services within the pediatric office, from pediatric specialists, and from community agencies or programs. All this information would be recorded or uploaded into the EHR to provide a central repository of clinical information for the child. The creation and update of the pathways would also bring together different constituencies from the community to advocate for improved children’s services and health care financing. 15 Electronic Health Records Technology would be an important part of the ideal WCC system, especially given the high penetration rate of computers in homes and the growing number of physician offices that are using an electronic health record.54 However there are still a significant number of minority families who do not have computers in the home.55 This raises concerns that the digital divide will only get wider, as more access to health care is offered over the internet. This trend has been somewhat mitigated through access to computers at work, community centers, churches, and schools. Each child’s EHR would be accessible to all treating health professionals. In addition, each family would have a personal health record, which would be closely integrated into the electronic health record. The personal health record would be based online, enabling families to review the results of diagnostic tests and specialty visits and input information, such as pulmonary function tests for children with asthma. The EHR would also be linked to a regional health information network that would allow the anonymous collection of health outcome data for quality reporting and public health initiatives and facilitate access to other data repositories. The EHR would send reminders to clinicians and families about needed preventive care. Finally, EHRs could provide decision support at the point of care to ensure access to evidence- based medical information. Information and Knowledge Transfer In an high-performing WCC system, families would be empowered through rapid access to needed information. Practices would direct parents to vetted Web sites for information about a range of topics, from child-rearing to disease management. Each child’s PHR would provide a robust view of parts of his or her EHR that would provide up-to-date information about diagnostic studies, growth and development, medications, and health promotion and treatment plans. Unique aspects of a child’s stage of development or health status would be linked to online information and interactive health care programs. Parents would also be able to communicate with a multidisciplinary health team through secure messaging and/or a telephone information line. Families with limited English proficiency would have access to interpreter services. These service could be made available through video-conferencing technology that could provide access in a broad array of languages. Members of the health care team will familiarize themselves with cultural values and traditions using Web-based interactive programs that show how these values and traditions interact with clinical care. 16 RECOMMENDATIONS TO THE FIELD The following recommendations for key strategies for achieving a high-performing well-child care system are organized according to four levels in patient care, as described by Berwick:56 • the experience of the patient; • the microsystem, or the functioning of small units of care delivery; • health care organizations that support microsystems; and • the environment of policy, payment, accreditation, and regulation that shapes the behavior, interests, and opportunities of health care organizations. We have grouped the recommendations according to the level of patient care in which they would have the greatest impact. We recognize, however, that many of the recommendations cross multiple levels and affect multiple levels of patient care. The Experience of the Patient The child and family are at the center of the health care system. Transformational change in WCC ultimately must support families in their efforts to promote healthy behaviors, optimize child development, and care for themselves. Knowledge transfer. To care for their children and participate in the medical decision- making process, families need access to accurate information and effective systems for knowledge transfer. A significant percentage of families feel their physician does not adequately communicate with them about important behavioral or developmental issues; additionally, more than half of families of CSHCN feel that their doctors do not communicate well with them.57 This report highlights the importance of information technology as a means to improve communications between providers and families. We recommend that: • Every family has access to a personal health record that contains all of their child’s health information. Families should be able to input information about their child into the personal health record and review the electronic health record. • Families have access to a Web-based repository of information about child development and behavior, health promotion, and illness that is that is evidence- based and up to date—a Bright Futures for families.58 This repository should be indexed so that distinct modules of information can be linked to personal health records. The American Academy of Pediatrics, American Academy of Family Physicians, and/or the federal government could undertake the development and maintenance of the repository. 17 • Families have access to Web-based interactive health programs that support their efforts to foster optimal development of their child. These programs have proven effective in managing children’s chronic conditions.59 For example, some programs use a videogame format to teach children about asthma or diabetes. Such tools can also enable clinicians to monitor health indicators, continuously adjusting and improving management plans.60 Team-based care. Best practices in well-child care call for the family to play a greater role in the design and management of services. We recommend that: • Parents are included in the health care team to aid in planning and delivering care. • All change ideas be considered from the perspective of the patient and family. The Microsystem A significant number of these recommendations occur at the level of the microsystem and can be implemented by office or clinic teams. While some depend on the development of new technologies or the identification of new sources of funding, many could be implemented immediately. Advanced access to care. We recommend that practices caring for children increase contact between families and health care teams through the use of encounters that do not require office visits. In particular, we recommend use of: • secure messaging; • Web-based visits; and • videoconferencing and telehealth encounters. Team-based care. We recommend that: • WCC be provided to each child by a multidisciplinary team of health care professionals. This team might include developmental and behavioral specialists, care coordinators, and home visitors. Each team would be customized to meet the needs of a particular child and family. Some of these professionals could be shared among practices. • Children with special health care needs have access to a care coordinator. This individual would help families navigate complex systems, interface with payers, and develop a comprehensive plan that encompasses education and socialization as well as health care. 18 Individualized developmental and behavioral screening. Best practices in WCC require continuous developmental surveillance for children. We recommend that: • Health care professionals assess children’s development and behavior using valid screening instruments. The results of the screening would be available to clinicians prior to WCC visits in order to identify children at risk and best meet the expressed needs of families. • Health care professionals who care for racially and ethnically diverse populations use developmental and behavioral screening instruments that have been validated among different minority groups. • Every newborn be screened for biological and psychosocial risk factors and stratified into different groups according to risk. This could take place in the newborn nursery or during the first few WCC visits. • The WCC encounter is customized to family’s needs and children’s risk levels. Care coordination in the context of a medical home. We recommend that: • Families have access to a care coordinator to provide help in navigating the health care system and coordinating care across different providers and agencies. • CSHCN have written treatment plans for the family and other providers outside of the medical home. The Health Care Organization In making recommendations for health care organizations, we have focused on change ideas that are applicable to all health care settings. Advanced access to care. We recommend that: • Health care organizations allow parents to make same-day appointments or appointments at desired times in the future. • The appointment system is available online as well as by telephone. Cultural beliefs and practices of racial and ethnic minority groups. We recommend that: • Children and families have access to language and other cultural interpretation services in cases where English is not the language spoken at home. 19 • Health care organizations consider providing some components of WCC in sites such as day care centers, churches, or homes. Some families might find such settings more familiar or comfortable than health clinics or physician offices. • Health care teams include members who are familiar with the beliefs and practices of their patient populations. Electronic health records. We recommend that: • Health care organizations commit to the implementation of electronic health records and elimination of paper-based transactions. • Each child has a personal health record that provides a view into their electronic health record. Families could engage in secure messaging with their clinicians; view results of diagnostic tests, visit summaries, or consultations; input details of their children’s health status; and share information with other health care professionals. The Environment The following recommended changes to the health care environment would involve interaction or integration with other agencies (e.g., schools, day care, or community programs)in the community and/or policy changes. Advanced access to care. We recommend that: • Greater use is made of home visits to deliver much of the content of WCC. • Where feasible, developmental and educational assessments are performed in schools and day care centers, and telehealth encounters are used to bring expert care to children and families. Care coordination in the context of a medical home. Effective and comprehensive WCC will require pediatric clinicians to partner with community and government agencies. It will also require population-based health initiatives, such as obesity prevention. We recommend: • Development of community pathways that bring together the health care system, schools, and other community agencies to provide a clear path for children who need a wide array of services. • The use of technology to provide real-time videoconferencing between families, health care providers, and community agencies. 20 Electronic health records. High-quality care coordination will require that the records of hospitals, clinics, schools, and community agencies are integrated into an electronic community health record that is accessible to all health care professionals. We recommend that: • The integration of health care information across the community, state, and country using common standards. • The creation of regional health information organizations (RHIOs). RHIOs would be able to integrate information across providers to create a community health record as well as regional and national databases to facilitate disease surveillance and outcomes assessment. Health care financing. Many of the suggested reforms in well-child care would depend on a health care financing system that provides universal access to health care for children. We recommend: • The enactment of universal health care coverage legislation for children. Because the health of the child is often dependent on the health of the family, this coverage should be extended to mothers and fathers. • Short of universal coverage, intermediate steps should be taken to expand access to care, including: appropriate reimbursement for health interactions other than face- to-face encounters; a level of reimbursement based on the degree of biological and psychosocial risk of the child and family; and reimbursement for the activities of non-physician members of the health care team such as mental health professionals and child development specialists. CONCLUSIONS WCC as it exists today is in need of transformational change. The current system does not meet the needs of families or the aspirations of providers. The change ideas presented in this report are intended to serve as a template for the future direction of WCC. But the articulation of system changes alone is not sufficient. If we are to bridge the considerable gap between what is and what could be in WCC, we will need to begin a stepwise process to bring about transformational change. We will not be successful unless we pair changes in practice with changes in reimbursement. In particular, provider incentives need to be designed to promote best practices in preventive and developmental care. Effecting change will also require strong 21 leadership from organizations and agencies such as the American Academy of Pediatrics, the American Academy of Family Practice, and the Maternal and Child Health Bureau. It is essential that we embark on the first steps of this change process as quickly as possible. Current trends in pediatric practice foretell daunting challenges for the provision of WCC. As child health care providers, researchers, advocates, and policymakers, it is our responsibility to take the lead in responding to the changing epidemiology of pediatric practice, the gaps in our current system of WCC, and the evolving needs of families. The opportunity exists to move beyond a vision of what can be done to the creation of a high-performing system of well-child care. 22 NOTES 1 D. M. Berwick, “Developing and Testing Changes in Delivery of Care,” Annals of Internal Medicine, Apr. 15, 1998 128(8):651–56. 2 American Academy of Pediatrics, Bright Futures, 2002. http://www.brightfutures.org/. 3 National Ambulatory Care Medical Survey: 2004 Summary 2004. 4 P. H. Dworkin, D. Allen, A. Geertsma et al., “Does Developmental Content Influence the Effectiveness of Anticipatory Guidance?” Pediatrics, Aug. 1987 80(2):196–202; K. T. Young, K. Davis, C. 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Schoen et al., 1998; Statistics NCfH, 2001. 58 http://www.brightfutures.org/. 59 T. N. Robinson, K. Patrick, T. R. Eng et al., Oct. 14, 1998. 60 S. Krishna, E. A. Balas, D. C. Spencer et al., “Clinical Trials of Interactive Computerized Patient Education: Implications for Family Practice,” Journal of Family Practice, July 1997 45(1):25–33; D. H. Gustafson, R. Hawkins, E. Boberg et al., “Impact of a Patient-Centered, Computer-Based Health Information/Support System,” American Journal of Preventive Medicine, Jan. 1999 16(1):1–9. 26 APPENDIX A-1. LIST OF JOURNAL ARTICLES REVIEWED # Title Authors Journal/Publication Vol. Iss. Date Pages 1 Rethinking Well-Child Care Schor EL Pediatrics 114 1 Jul-04 210(7) A Clinical Trial of Tailored Office Systems for Preventive Service Delivery: The Study to Enhance Goodwin MA, Zyzanski SJ, American Journal of 2 Prevention by Understanding Practice (STEP-UP) Zronek S et al. Preventive Medicine 21 1 Jul-01 20–28 Continuity of Primary Care Clinician in Early Inkelas M, Schuster MA, Olson 3 Childhood LM et al. Pediatrics 113 6 Jun-04 1917(9) Halfon N, Regalado M, Sareen 4 Assessing Development in the Pediatric Office H et al. Pediatrics 113 6 Jun-04 1926(8) Halfon N, Inkelas M, Mistry R (6 5 Satisfaction with Health Care for Young Children et al. Pediatrics 113 Suppl) Jun-04 1965–72 More Evidence for Reach Out and Read: A Home- Weitzman CC, Roy L, Walls T 6 Based Study et al. Pediatrics 113 5 May-04 1248(6) A Randomized Controlled Trial of an Information Prescription for Pediatric Patient Education on the D’Alessandro DM, Kreiter CD, 7 Internet Kinzer SL et al. Arch Pediatr Adolesc Med 158 2004 857–862 8 Practical Principals for Primary Care Pommerenke FA, Dietrich A Journal of Family Practice 34 1992 92–97 9 The Delivery of Clinical Preventive Services Hahn DL, Olson N Journal of Family Practice 48 10 1999 785–789 How Much Time Is Spent on Well-Child Care and LeBaron CW, Rodewald L, 10 Vaccinations? Humiston S Arch Pediatr Adolesc Med 153 11 Nov-99 1154–1159 11 Applying the Patient Model Pommerenke FA, Dietrich A Journal of Family Practice 34 1 Jan-92 86(6) Understanding Change in Primary Care Practice Using Miller WL, Crabtree BF, 12 Complexity Theory McDaniel R et al. Journal of Family Practice 46 5 May-98 369(8) Primary Care Practice Organization and Preventive Crabtree BF, Miller WL, Aita 13 Services Delivery: A Qualitative Analysis VA et al. Journal of Family Practice 46 5 May-98 403(7) Reducing Missed Opportunities to Vaccinate During Child Health Visits: How Effective Are Parent Wood DW, Schuster M, 14 Education and Case Management? Donald-Sherbourne C et al. Arch Pediatr Adolesc Med 152 3 Mar-98 238–243 Getting The Incentives Right for Children. (Improving the Quality of Healthcare for Children: An Agenda for 15 Research) Glied S Health Services Research 33 4 Oct-98 1143(18) Delivery of Preventive Health Services for Breast Cancer Control: A Longitudinal View of a Randomized Gimotty PA, Burack RC, 16 Controlled Trial George JA Health Serv Res. 37 1 Feb-02 65–85 Usual Source of Care in Preventive Service Use: A 17 Regular Doctor Versus a Regular Site Xu KT Health Serv Res. 37 6 Dec-02 1509–1529 Yarnall KSH, Pollak KI, Ostbye 18 Primary Care: Is There Enough Time for Prevention? T et al. Am J Public Health 93 4 Apr-03 635–641 Annual Review of Public 19 Nonfinancial Barriers to Care for Children and Youth Halfon N, Inkelas M, Wood D Health 16 1995 447–72 27 # Title Authors Journal/Publication Vol. Iss. Date Pages Injury Prevention Counseling in an Urban Pediatric Gielen AC, McDonald EM, 20 Clinic Forrest CB et al. Arch Pediatr Adolesc Med 151 2 Feb-97 146–151 Introduction of a Recorded Health Information Line Kempe A, Dempsey C, Poole 21 into a Pediatric Practice SR Arch Pediatr Adolesc Med 153 6 Jun-99 604–610 Miller PA, Binns HJ, Christoffel 22 Children’s Bicycle Helmet Attitudes and Use KK Arch Pediatr Adolesc Med 150 12 Dec-96 1259–1264 Short-Term Effectiveness of Anticipatory Guidance to 23 Reduce Early Childhood Risks for Subsequent Violence Sege RD, Perry C, Stigol L et al. Arch Pediatr Adolesc Med 151 4 Apr-97 392–397 Predicting Clinician Injury Prevention Counseling for 24 Young Children Barkin S, Fink A, Gelberg L Arch Pediatr Adolesc Med 153 12 Dec-99 1226–1231 Use of the Pediatric Symptom Checklist to Screen for Jellinek MS, Murphy JM, Little 25 Psychosocial Problems in Pediatric Primary Care M et al. Arch Pediatr Adolesc Med 153 3 Mar-99 254–260 Changes in the Daily Practice of Primary Care for Ferris TG, Saglam D, Stafford 26 Children RS et al. Arch Pediatr Adolesc Med 152 3 Mar-98 227–233 Group Well Child Care for High-Risk Families: 27 Maternal Outcomes Taylor JA, Kemper KJ Arch Pediatr Adolesc Med 152 6 Jun-98 579–84 Determinants of Counseling in Primary Care Pediatric Practice: Physician Attitudes About Time, Money, and Cheng TL, DeWitt TG, 28 Health Issues Savageau JA et al. Arch Pediatr Adolesc Med 153 6 Jun-99 629–635 Gerard JM, Klasner AE, Madhok 29 Poison Prevention Counseling M et al. Arch Pediatr Adolesc Med 154 1 Jan-00 65–70 Early Effects of the Healthy Steps for Young Children Minkovitz C, Strobino D, 30 Program Hughart N et al. Arch Pediatr Adolesc Med 155 4 Apr-01 470–479 Primary Care Services Promoting Optimal Child Development from Birth to Age 3 Years: Review of the 31 Literature Regalado M, Halfon N Arch Pediatr Adolesc Med 155 12 Dec-01 1311–1322 A Randomized Controlled Trial of General Practitioner 32 Safety Advice for Families with Children Under 5 Years Clamp M, Kendrick D BMJ 316 7144 May-98 1576–1579 Evidence Based Well Child Care. (Evidence Based Dinkevich E, Hupert J, Moyer 33 Paediatrics, Part 1) VA BMJ 323 7317 13-Oct-01 846–849 The Mother-Infant Relationship and Infant 34 Development: The Effect of Pediatric Intervention Whitt JK, Casey PH Child Dev 53 4 Aug-82 948–956 The Effectiveness of Health Education On Home Use of Dershewitz RA, Posner MK, 35 Ipecac Paichel W Clin Pediatr 22 Apr-83 268–270 Listening Carefully. Improving Communication About Behavior and Development. Recognizing Parental 36 Concerns Triggs EG, Perrin E Clin Pediatr 28 Apr-89 185–192 A Practice Based Intervention to Enhance Quality of Care in the First 3 Years of Life: The Healthy Steps for Minkovitz CS, Hughart N, 37 Young Children Program Strobino D et al. JAMA 290 23 17-Dec-03 3081–3091 38 Optimizing the Health and Development of Children Halfon N, Inkelas M JAMA 290 23 17-Dec-03 3136–3138 28 # Title Authors Journal/Publication Vol. Iss. Date Pages Resolving the Gatekeeper Conundrum: What Patients Grumbach K, Selby JV, 39 Value in Primary Care and Referrals to Specialists Damberg C et al. JAMA 282 3 21-Jul-99 261–266 Long-Term Effects of Nurse Home Visitation on Children’s Criminal and Antisocial Behavior: 15-Year Olds DL, Henderson CR, Cole 40 Follow-Up of a Randomized Controlled Trial R et al. JAMA 280 14 14-Oct-98 1238–1244 Increasing Immunization Rates Among Inner-City, African-American Children: A Randomized Trial of Wood D, Halfon N, Donald- 41 Case Management Sherbourne C et al. JAMA 279 1 7-Jan-98 29–34 Long-Term Effects of Home Visitation on Maternal Life Course and Child Abuse and Neglect: Fifteen-Year Olds DL, Eckenrode J, 42 Follow-Up of a Randomized Trial Henderson CR et al. JAMA 278 8 27-Aug-97 637–643 Effect of Prenatal and Infancy Home Visitation by Nurses on Pregnancy Outcomes, Childhood Injuries, and Repeated Childbearing: A Randomized Controlled Kitzman H, Olds DL, 43 Trial Henderson CR Jr et al. JAMA 278 8 27-Aug-97 644–652 Protecting Children with Chronic Illness in a 44 Competitive Marketplace Neff, JM, Anderson G JAMA 274 23 20-Dec-95 1866–69 Developmental Services in Primary Care for Low- Income Children: Clinicians’ Perceptions of the Healthy McLearn KT, Strobino DM, 45 Steps for Young Children Program Hughart N et al. Journal of Urban Health 81 2 Jun-04 206–221 How Do I Judge the “Medical Homeness” of My Schulz EG, Buchanan G, Ochoa 46 Practice? E Clin Pediatr 43 5 Jun-04 431–5 Exploring the Business Case for Improving the Quality Homer C, Child Health Business 47 of Health Care for Children Case Working Group Health Affairs 23 4 Jul-Aug-04 159–66 Sheridan A, Hegarty I, Flanagan 48 Consumer Satisfaction with Child Health Clinics E et al. Irish Medical Journal 97 5 May-04 143–5 Measuring the Quality pf Preventive and Developmental Services for Young Children: National Estimates and Bethell C, Reuland CH, Halfon (6 49 Patterns of Clinicians’ Performance N et al. Pediatrics 113 Suppl) Jun-04 1973–83 Routine Assessment of Family and Community Health Kogan MD, Schuster MA, Yu (6 50 Risks: Parent Views and What they Receive SM et al. Pediatrics 113 Suppl) Jun-04 1934–43 The Prevention Index: Using Technology to Improve Vogt TM, Aickin M, Ahmed F 51 Quality Assessment et al. Health Services Research 39 3 Jun-04 511–30 Measure of Processes of Care (MPOC) Applied to Measure Parent’s Perception of the Habilitation Process Bjerre IM, Larsson M, Franzon Child: Care, Health & 52 in Sweden AM et al. Development 30 2 Mar-04 123–30 Health Care for Children and Youth in the United States: 2002 Report on Trends in Access, Utilization, Simpson L, Zodet MW, Mar/Apr- 53 Quality, and Expenditures Chevarley FM et al. Ambulatory Pediatrics 4 2 04 131–53 29 # Title Authors Journal/Publication Vol. Iss. Date Pages Providing a Medical Home: The Cost of Care Coordination Services in a Community-Based, General (5 54 Pediatric Practice Antonelli RC, Antonelli DM Pediatrics 113 Suppl) May-04 1522–8 Palfrey JS, Sofis LA, Davidson EJ The Pediatric Alliance for Coordinated Care: Evaluation et al., Pediatric Alliance for (5 55 of a Medical Home Model Coordinated Care Pediatrics 113 Suppl) May-04 1507–1516 Continuity of Medical Care, Health Insurance, and Bradford WD, Kaste LM, 56 Nonmedical Advice in the First 3 Years of Life Nietert PJ Medical Care 42 1 Jan-04 91–8 Implementing and Using Quality Measures for Children’s Health Care: Perspectives on the State of the 57 Practice Shaller D Pediatrics 113 (1 Pt 2) Jan-04 217–27 Parents’ Perceptions of Pediatric Primary Care Quality: 58 Effects of Race/Ethnicity, Language, and Access Seid M, Stevens GD, Varni JW Health Services Research 38 4 Aug-03 1009–31 Racial and Ethnic Disparities in the Primary Care Medical Care Research & 59 Experiences of Children: A Review of the Literature Stevens GD, Shi L Review 60 1 Mar-03 3–30 Continuity of Care Is Associated with Well-Coordinated Christakis DA, Wright JA, Mar-Apr- 60 Care Zimmerman FJ et al. Ambulatory Pediatrics 3 2 03 82–6 Use of an Electronic Medical Record Improves the Adams WG, Mann AM, 61 Quality of Urban Pediatric Primary Care Bauchner H Pediatrics 111 3 Mar-03 626–32 Recognition and Treatment of Mental Disorders in Ringeisen H, Oliver KA, 62 Children: Considerations for Pediatric Health Systems Menvielle E Paediatric Drugs 4 11 2002 697–703 63 Health Services Research for Children with Disabilities Perrin JM Milbank Quarterly 80 2 2002 303–24 Racial and Ethnic Disparities in the Quality of Primary 64 Care for Children Stevens GD, Shi L Journal of Family Practice 51 6 Jun-02 573 Assessing the Quality of Preschool Child Health Surveillance in Primary Care: A Pilot Study in One Hampshire AJ, Blair ME, Crown Child: Care, Health & 65 Health District NS et al. Development 28 3 May-02 239–49 Improving the Health of Infants on Medicaid by Collocating Special Supplemental Nutrition Clinics with Kendal AP, Peterson A, American Journal of Public 66 Managed Care Provider Sites Manning C et al. Health 92 3 Mar-02 399–403 Sept-Oct- 67 Challenges in Long-Term Health Care for Children Stein RE Ambulatory Pediatrics 1 5 01 280–8 Evidence-Based Health Care Coverage for Children: 68 Proceed with Caution Wehr E Ambulatory Pediatrics 1 1 Jan-Feb-01 23–7 Quality Improvement in Pediatric Well Care with an Proceedings / AMIA ... 69 Electronic Record Gioia PC Annual Symposium 2001 209–13 From Concept to Application: The Impact of a Community-Wide Intervention to Improve the Margolis PA, Stevens R, Bordley 70 Delivery of Preventive Services to Children WC et al. Pediatrics 108 3 Sep-01 E42 Improving Preventive Service Delivery Through Office Bordley WC, Margolis PA, 71 Systems Stuart J et al. Pediatrics 108 3 Sep-01 E41 30 # Title Authors Journal/Publication Vol. Iss. Date Pages Racial and Ethnic Differences in Parents’ Assessments of Weech-Maldonado R, Morales 72 Pediatric Care in Medicaid Managed Care LS, Spritzer K et al. Health Services Research 36 3 Jul-01 575–94 Parents: The Best Experts in Child Health Care? Viewpoints from Parents and Staff Concerning Child Hallberg AC, Lindbladh E, Patient Education & 73 Health Services Rastam L et al. Counseling 44 2 Aug-01 151–9 Effects of Structured Encounter Forms on Pediatric House Staff Knowledge, Parent Satisfaction, and Quality Archives of Pediatrics & 74 of Care. A Randomized, Controlled Trial Zenni EA, Robinson TN Adolescent Medicine 150 9 Sep-96 975–80 Clinical Management. Where Medicine Meets 75 Management. Crib Notes Lewis C Health Service Journal 114 5891 5-Feb-04 28–9 Information Technology and The Future of Child Archives of Pediatrics & 76 Health Care: A Revolution Is Occurring Weitzman M, Shiffman RN Adolescent Medicine 155 9 Sep-01 990–1 Winter 77 Home Visits: Necessary But Not Sufficient Weiss HB The Future of Children 3 3 1993 113–128 78 What Constitutes Adequate Well-Baby Care? Hoekelman RA Pediatrics 55 3 1975 313–26 79 Anticipatory Guidance in Pediatric Practice Reisinger KS, Bires JA Pediatrics 66 6 1980 889–892 Preventive Care Use by School-Aged Children: 80 Differences by Socioeconomic Status Newacheck PW, Halfon N Pediatrics 82 3 Sep-88 462–468 Psychosocial Problems During Child Health Supervision Sharp L, Pantell RH, Murphy 81 Visits: Eliciting, Then What? LO et al. Pediatrics 89 4 Apr-92 619–623 Reducing Night Waking in Infancy: A Primary Care Adair R, Zuckerman B, 82 Intervention Bauchner H et al. Pediatrics 89 4 Apr-92 585–588 Group Health Supervision Visits More Effective Than Dodds M, Nicholson L, Muse B 83 Individual Visits in Delivering Health Care Information et al. Pediatrics 91 3 Mar-93 668–670 Childhood Injury Prevention Counseling in Primary Bass JL, Christoffel KK, Widome 84 Care Settings: Critical Review of the Literature M et al. Pediatrics 92 4 Oct-93 544–550 Does Prenatal and Infancy Home Visitation Have Enduring Effects on Qualities of Parental Caregiving and Olds DL, Henderson CR Jr, 85 Child Health at 25 to 50 Months of Life? Kitzman H Pediatrics 93 1 Jan-94 89–98 Excessive Infant Crying: A Controlled Study of Mothers 86 Helping Mothers. Wolke D, Gray P, Meyer R Pediatrics 94 3 Sep-94 322–332 Preventive Pediatrics: New Models of Providing Needed 87 Services Zuckerman B, Parker S Pediatrics 95 5 May-95 758–762 The Role of Parents in the Detection of Developmental 88 and Behavioral Problems Glascoe FP, Dworkin PH Pediatrics 95 6 Jun-95 829–836 Pediatric Office-Based Smoking Intervention: Impact on Wall MA, Severson HH, 89 Maternal Smoking and Relapse Andrews JA et al. Pediatrics 96 4 Oct-95 622–628 90 Capitation Adjustment for Pediatric Populations Fowler EJ, Anderson GF Pediatrics 98 1 Jul-96 10–17 Assuring Quality of Care for Children With Special Needs in Managed Care Organizations: Roles for 91 Pediatricians Ireys HT, Grason HA, Guyer B Pediatrics 98 2 Aug-96 178–85 31 # Title Authors Journal/Publication Vol. Iss. Date Pages Utilization of Well-Child Care Services for African- American Infants in a Low-Income Community: Results of a Randomized, Controlled Case Management/Home Schuster MA, Wood DL, Duan 92 Visitation Intervention N et al. Pediatrics 101 6 Jun-98 999(7) Screening, Early Identification, and Office-Based Intervention with Children and Youth Living in 93 Substance-Abusing Families Werner MJ, Joffe A, Graham AV Pediatrics 103 5 May-99 1099–1112 Instruction, Timeliness, and Medical Influences Brazelton TB, Christophersen 94 Affecting Toilet Training ER, Frauman AC et al. Pediatrics 103 6 Jun-99 1353–1358 The Scope of Unmet Maternal Health Needs in Kahn RS, Wise PH, Finkelstein 95 Pediatric Settings JA et al. Pediatrics 103 3 Mar-99 576–581 Screening for Domestic Violence in the Community Siegel RM, Hill TD, Henderson 96 Pediatric Setting VA et al. Pediatrics 104 4 Oct-99 874–877 The Use of Physician Financial Incentives and Feedback to Improve Pediatric Preventive Care in Medicaid Hillman AL, Ripley K, Goldfarb 97 Managed Care N et al. Pediatrics 104 4 Oct-99 931–934 Increasing Identification of Psychosocial Problems: Kelleher KJ, McInerny TK, 98 1979–1996 Gardner WP et al. Pediatrics 105 6 Jun-00 1313–1321 99 The Medical Home. (Policy Statement) Pediatrics 110 1 Jul-02 184–186 Building Medical Homes: Improvement Strategies in Primary Care for Children with Special Health Care (5 100 Needs Cooley WC, McAllister J Pediatrics 113 suppl) May-04 1499–1506 Overview of the Content of Health Supervision for Young Children: Reports From Parents and Olson LM, Inkelas M, Halfon N 101 Pediatricians et al. Pediatrics 113 6 Jun-04 1907–1916 Financing Childhood Health Supervision Services in the (6 102 21st Century Berman S Pediatrics 113 Suppl) Jun-04 1984–5 Small Steps and Big Leaps: Implications of the National Survey of Early Childhood Health for Improving the Quality of Preventive and Developmental Care for (6 103 Young Children Margolis PA Pediatrics 113 Suppl) Jun-04 1988–90 The Medical Home, Access to Care, and Insurance: A (5 104 Review of Evidence Starfield B, Shi L Pediatrics 113 suppl) May-04 1493–1498 Pediatrician Counseling About Preventive Health Topics: Results from the Physicians’ Practices Survey, Galuska DA, Fulton JE, Powell 105 1998-1999 KE et al. Pediatrics 109 5 May-02 951(1) Improving Physicians’ Preventive Health Care Behavior Morrow RW, Gooding AD, Archives of Family 106 Through Peer Review and Financial Incentives Clark C Medicine 4 2 Feb-95 165–69 Office Education by Pediatricians to Increase Seat Belt Mackinin ML, Gustafson C, Am Journal of Diseases of 107 Use Gassman J et al. Children 141 12 Dec-87 1305–1307 32 # Title Authors Journal/Publication Vol. Iss. Date Pages Identifying Children with Special Health Care Needs: Development and Evaluation of a Short Screening Bethell CD, Read D, Stein RE 108 Instrument et al. Ambulatory Pediatrics 2 1 Jan-Feb-02 38–48 Evidence-Based Well-Baby Care. Part I: Overview of Panagiotou L, Rourke LL, 109 the Next Generation of the Rourke Baby Record Rourke JTB et al. Can Fam Physician 44 Mar-98 558–67 How Many Well-Baby Visits Are Necessary in the First Gilbert JR, Feldman W, Siegel 110 2 Years of Life? LS et al. Can Med Assoc J 130 1 1-Apr-84 857–61 Patient-Specific Reminder Letters and Pediatric Well- Campbell JR, Szilagyi PG, 111 Child-Care Show Rates Rodewald LE et al. Clin Pediatr 33 5 May-94 268(5) Expectations, Goals, and Perceived Effectiveness of Child Health Supervision: A Study of Mothers in a Cheng TL, Savageau JA, DeWitt 112 Pediatric Practice TG et al. Clin Pediatr 35 3 Mar-96 129(9) An Analysis of Group Versus Individual Child Health 113 Supervision Rice RL, Slater CJ Clin Pediatr 36 12 Dec-97 685–9 Well-Child Care: Effectiveness of Current 114 Recommendations Dinkevich E, Ozuah PO Clin Pediatr 41 4 May-02 211(7) The Effectiveness of Waiting Room Notice-Boards As a Wicke DM, Lorge RE, Coppin 115 Vehicle for Health Education RJ et al. Fam Pract 11 3 Sep-94 292–295 Payment Mechanisms, Nonprice Incentives, and 116 Organizational Innovation in Health Care Robinson JC Inquiry 30 3 Fall 1993 328–33 Reducing Sleep Disruptions in Young Children: Evaluation of Therapist Guided and Written Information Seymour FW, Brock P, During 117 Approaches: A Brief Report M et al. J Child Psychol Psychiatry 30 6 Nov-89 913–918 Effects of Parent Training on Infant Sleeping Patterns, Wolfson A, Lacks P, Futterman 118 Parents’ Stress, and Perceived Parental Competence A J Consult Clin Psychol 60 1 Feb-92 41–48 Family Psychosocial Screening: Should We Focus on Kemper KJ, Osborn LM, Hansen 119 High-Risk Settings? DF et al. J Dev Behav Pediatr 15 5 Oct-94 336–341 Kilo CM, Triffletti P, Tantau C Nov-Dec- 120 Improving Access to Clinical Offices et al. J Med Pract Manage. 16 3 00 126–132 Family Support and Parenting Education in the Home: An Effective Extension of Clinic-Based Preventive 121 Health Care Services for Poor Children Hardy JB, Streett R J Pediatr 115 6 Dec-89 927–931 Patient-Doctor Agreement About Problems Needing Starfield F, Steinwachs D, Morris 122 Follow-Up Visit I et al. JAMA 242 4 27-Jul-79 344–346 Population-Based Study of the Adequacy of Well-Child 123 Care Services: A Rural County’s Report Card Gadomsky AM JAMA 152 8 Aug-98 745–748 The Association of Attributes of Primary Care with the Flocke SA, Stange KC, Zyzanski AS21– 124 Delivery of Clinical Preventive Services SJ Medical Care 36 8(suppl) Aug-98 AS30 What Have HMOs Learned About Clinical Prevention Services? An Examination of the Experience at Group 125 Health Cooperative of Puget Sound Thompson RS Milbank Quarterly 74 4 1996 469–511 33 # Title Authors Journal/Publication Vol. Iss. Date Pages Baby, Be Safe: The Effect of Tailored Communications for Pediatric Injury Prevention Provided in a Primary Nansel TR, Weaver N, Donlin Patient Education and 126 Care Setting M et al. Counseling 46 3 Mar-02 175(16) A Randomized Controlled Trial of Group Versus Individual Well Child Care for High-Risk Children: Maternal-Child Interaction and Developmental 127 Outcomes Taylor JA, Davis RL, Kemper KJ Pediatrics 99 6 Jun-97 E9 Health Care Utilization and Health Status in High-Risk Children Randomized to Receive Group or Individual 128 Well Child Care Taylor JA, Davis RL, Kemper KJ Pediatrics 100 3 Sep-97 E1 Case Management and Preventive Services Among Erkel EA, Morgan EP, Staples 129 Infants from Low-Income Families MA et al. Public Health Nurs 11 5 Oct-94 352–360 Defining the Future of Primary Care: What Can We Annals of Internal 130 Learn from Patients? Safran DG Medicine 138 3 4-Feb-03 248–255 Anticipatory Guidance: What Information Do Parents Schuster MA, Regalado M, Archives of Pediatrics & 131 Receive? What Information Do They Want? Duan N et al. Adolescent Medicine 154 12 Dec-00 1191 Continuity of Care Is Associated with High-Quality Christakis DA, Wright JA, 132 Care by Parental Report Zimmerman FJ et al. Pediatrics 109 4 Apr-02 694(2) How to Prevent Exposure to Tobacco Smoke Among Arborelius E, Hallberg AC, 133 Small Children: A Literature Review Hakansson A Acta Paediatr Suppl 89 5 May-00 65–70 Systematic Review of the School Entry Medical Barlow J, Stewart-Brown S, 134 Examination Fletcher J Arch Dis Child. 78 Apr-98 301–311 Is Routine Growth Monitoring Effective? A Systematic 135 Review of Trials Garner P, Panpanich R, Logan S Arch Dis Child. 82 Mar-00 197–201 Randomized Trial of Enhanced Anticipatory Guidance Gielen AC, Wilson ME, 136 for Injury Prevention McDonald EM et al. Arch Pediatr Adolesc Med 155 1 Jan-01 42–49 Interventions to Reduce Unintended Pregnancies Among Adolescents: Systematic Review of Randomized DiCenso A, Guyatt G, Willan A 137 Controlled Trials et al. BMJ 324 7351 15-Jun-02 1426 Advising Parents of Asthmatic Children on Passive Irvine L, Crombie IK, Clark RA 138 Smoking: Randomised Controlled Trial et al. BMJ 318 7196 29-May-99 1456–1459 Neonatal Examination and Screening Trial (NEST): A Randomised, Controlled, Switchback Trial of Glazener CM, Ramsay CR, 139 Alternative Policies for Low Risk Infants Campbell MK et al. BMJ 318 7184 6-Mar-99 627–631 Individual-Level Injury Prevention Strategies in the 140 Clinical Setting DiGuiseppi C, Roberts IG Future Child 10 2000 53–82 Factors Affecting Physician Provision of Preventive Care Summer 141 to Medicaid Children Adams EK Health Care Financ Rev. 22 4 2001 9–26 Are Yearly Physical Examinations in Adolescents May-June- 142 Necessary? Stickler GB J Am Board Fam Pract 13 3 00 172–177 34 # Title Authors Journal/Publication Vol. Iss. Date Pages Review of Primary Care-Based Physical Activity Intervention Studies: Effectiveness and Implications for Eakin EG, Glasgow RE, Riley 143 Practice and Future Research KM J Fam Pract. 49 2 Feb-00 158–168 Users’ Guides to the Medical Literature. XVII. How to Use Guidelines and Recommendations About Barratt A, Irwig L, Glasziou P et 144 Screening: Evidence-Based Medicine Working Group al. JAMA 281 21 2-Jun-99 2029–2034 Pacifier Use, Early Weaning, and Cry/Fuss Behavior: A Kramer MS, Barr RG, Dagenais 145 Randomized Controlled Trial S et al. JAMA 286 3 18-Jul-01 322–326 A STD/HIV Prevention Trial Among Adolescents in Boekeloo BO, Schamus LA, 146 Managed Care Simmens SJ et al. Pediatrics 103 1 Jan-99 107–115 The Role of the Pediatrician in Youth Violence Prevention in Clinical Practice and at the Community American Academy of Pediatrics, 147 Level Task Force on Violence Pediatrics 103 1 Jan-99 173–181 A Systematic Review of Vision Screening Tests for the Kemper AR, Margolis PA, 5 148 Detection of Amblyopia Downs SM et al. Pediatrics 104 (suppl) Nov-99 1220–1222 Assessing Health System Provision of Well-Child Care: 149 The Promoting Healthy Development Survey Bethell C, Peck C, Schor EL Pediatrics 107 5 May-01 1084–1094 A Pediatric, Practice-Based, Randomized Trial of Drinking and Smoking Prevention and Bicycle Helmet, Stevens MM, Olson AL, Gaffney 150 Gun, and Seatbelt Safety Promotion CA et al. Pediatrics 109 3 Mar-02 490–497 Gaps in the Evidence for Well-Child Care: A Challenge 151 to Our Profession Moyer VA, Butler M Pediatrics 114 6 Dec-04 1511–1521 Preschool Vision Screening Frequency After an Office- 152 Based Training Session for Primary Care Staff Hered RW, Rothstein M Pediatrics 112 1 Jul-03 170–172 Effectiveness of Health Promotion Programs to Increase Motor Vehicle Occupant Restraint Use Among Young 1(Suppl 153 Children Grossman DC, Garcia CC Am J Prev Med. 16 1) Jan-99 12–22 Tailored Advice on Exercise: Does It Make A Bull FC, Jamrozik K, Blanksby 154 Difference? BA Am J Prev Med. 16 3 Apr-99 230–239 American College of Preventive Medicine Practice Policy Statement: Screening for Elevated Blood Lead 155 Levels in Children Lane WG, Kemper AR Am J Prev Med. 20 1 Jan-01 78–82 Evaluating Primary Care Behavioral Counseling Whitlock EP, Orleans CT, 156 Interventions: An Evidence-Based Approach Pender N et al. Am J Prev Med. 22 4 May-02 267–284 A Study of Periodic School Medical Examinations: Part 157 II: The Annual Increment of New “Defects” Yankauer A, Lawrence RA Am J Public Health 46 1956 1553–1562 Am Journal of Diseases of 158 Well Child Care Revisited Hoekelman RA Children 137 1983 1057–60 Anticipatory Guidance in Pediatric Practice: Are We Goldstein EN, Dworkin PH, 159 Doing More Or Less? Berstein B Ambulatory Child Health 3 1997 159 35 # Title Authors Journal/Publication Vol. Iss. Date Pages Sun Protection Counseling for Children: Primary Care Practice Patterns and Effect of fn Intervention on Dietrich AJ, Olson AL, Sox CH 160 Clinicians et al. Arch Fam Med. 9 2000 155–159 Cochrane Review: The Iron Therapy for Improving Psychomotor Development Cochrane Library. 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J Adolesc Health 20 1997 204–215 172 “Prudence” in Disease Prevention Froom J, Froom P J Clin Epidemiol. 44 1991 1127–1130 A Critical Review of Periodic Health Screening Using 173 Specific Screening Criteria Frame PS, Carlson SJ J Fam Pract. 2 1975 283–289 Journal of Family Health 174 Health Screening for Our Children O’Neill K Care 14 1 2004 24 Journal of the Arkansas 175 Early Childhood Screening by Primary Care Physicians Fussell JJ Medical Society 100 7 Jan-04 233–8 36 # Title Authors Journal/Publication Vol. Iss. Date Pages Partnering with Parents to Promote The Healthy Bethell C, Peck C, Abrams M et New York, NY: The 176 Development of Young Children Enrolled in Medicaid al. Commonwealth Fund 2002 Effectiveness of Brief Interventions to Reduce Alcohol Intake in Primary Health Care Populations: A Meta- 177 Analysis Poikolainen K Prev Med. 28 1999 503–509 Washington, DC: US Vision Screening in the Preschool Child: Proceedings of Department of Health and 178 a Conference Held September 1998 Hartmann E, ed. Human Services 1999 York, United Kingdom: National Health Service Centre for Reviews and Preschool Vision Screening: Results of a Systematic Dissemination, University 179 Review Snowden SK, Stewart-Brown SL of York 1997 37 APPENDIX A-2. SUMMARY OF LITERATURE REVIEW General Note: Numbers in parentheses refer to article numbers in Appendix A-1. 1. Anticipatory Guidance and Patient Education Simple, cost-effective anticipatory guidance can reduce developmental risks when provided during pediatric visits. Physicians, by their collective positions in society and their individual interactions with patients, can be facilitators in helping families adopt more healthful ways of living (79). Trial interventions have shown that inclusion of brief, targeted counseling sessions during routine pediatric visits can increase safety practices in the home and reduce harmful behaviors, such as violence and smoking (22, 23, 32, 89). Services provided during pediatric visits are not consistent, and recommended preventive services are often not provided. Providers often miss opportunities to provide recommended services, such as immunizations, injury counseling, and anticipatory guidance on psychosocial, behavioral, and safety topics during child health visits (14, 20, 28, 79). Many physicians selectively counsel only on specific topics, and the amount of time spent discussing each topic often varies (79, 105, 131). Physician attitudes regarding the importance of a health issue, their confidence and effectiveness in counseling, and their degree of training largely determine their practice (28, 29, 79). Patient’s age also affects the frequency with which specific preventive health topics were discussed (79,105). Parents who had discussed more of these topics with a clinician were more likely to report excellent care. Parents who could use more information on a larger number of topics were much more willing to pay for additional care. Many parents could use more information on these topics (131). Anticipatory guidance should be evidence-based and targeted to address specific population-based needs. Well-child care incorporates many screening tests (history and physical examination) and therapeutic interventions (e.g., anticipatory guidance). Unfortunately, almost no evidence is available to validate most of what makes up the health supervision visit (33, 110). The practitioner should limit safety counseling to selected areas that are most problematic at each age level, and within each topic, and should concentrate on the most salient points (35). Standardized guidelines for the provision of anticipatory guidance during routine visits increase the effectiveness of primary preventive care (24, 109). 38 2. Preventive Services Families that lack insurance receive fewer clinical preventive services. Evidence-based clinical preventive services are underutilized. Having insurance to pay for preventive services is an important factor in the delivery of such care (9). Children in families with incomes below the poverty level, especially those without Medicaid insurance, are much less likely to receive routine preventive care on a timely basis. Poor school-age children with Medicaid coverage are much more likely to receive timely preventive care than their counterparts without such coverage (80). Integrating screening, case management, and counseling into pediatric clinical care provision can increase preventive service delivery. Time constraints limit the ability of physicians to comply with preventive services recommendations (18). Parents’ desire to discuss topics such as smoking in the household, financial difficulties, injury prevention, and emotional support with pediatric providers support is often unmet (50, 84). Current literature supports more universal surveillance of parents with young children as a way to increase preventive service delivery (50). Studies have shown that offering assessment, counseling, and case management services as part of routine or acute clinical visits increases preventive service delivery (9, 84, 93, 125, 129). Proposed methods for achieving this integration include establishing population- and evidence-based systems for provision of care, and increasing provider training in the areas of identification and management (9, 84, 93, 114). Another promising way to increase provision of preventive services is to take advantage of case managers either within an HMO or through public health nurses who, because of their close integration with the family and their ability to provide continuous care, are uniquely positioned to facilitate the delivery of preventive services (125, 129). 3. Developmental and Behavioral Pediatrics There is an increased demand for identification and treatment of pediatric psychosocial problems in primary care settings. Demographic changes in the pediatric population over the last three decades, including increases in the proportions of single-parent families and Medicaid enrollment, have created a substantial increase in the number of clinician-identified psychosocial problems. This has lead to a subsequent increase in the use of psychotropic medications, counseling, and referral (98). Primary care settings currently play an active role in the identification and treatment of children with mental disorders. As many as one-third of children identified and treated for mental health problems receive outpatient mental health care from primary care providers. The quality of current pediatric mental health care could be 39 enhanced through increased opportunities for physician training, restructuring of current training efforts, increased focus on patient engagement strategies, equitable care incentives and reimbursement, and an integrated view of physical and mental health (62). Many children who need developmental and behavioral assessment do not receive them. Although guidelines endorse the provision of routine provision of developmental assessments, parents report that this does not often occur. When children do receive assessments, parents report greater satisfaction with care (4). Although parents and children are often given or frequently take opportunities to express psychosocial concerns, physicians do not consistently respond with information, reassurance, guidance, or referral (81). Many pediatricians report that time barriers and problems with reimbursement affect their ability to provide developmental services (45). Similarly, children who have psychosocial concerns or need mental health services frequently do not receive needed care. This stems from a failure to identify these children during primary care visits, problems with reimbursement, and insufficient treatment capacity (62, 81). Pediatric visits may be an optimal setting for screening of maternal health needs. Evidence suggests that many mothers of young children may have unmet personal health needs. A significant percentage of mothers screened during pediatric visits report alcohol abuse, emotional or physical abuse, or depression (95). There is some question as to whether maternal screening should be limited to only “high risk” clinical settings. However, studies have shown that mothers seen in “low-risk” settings commonly report alcoholism and psychosocial problems (119). Recently, the American Academy of Pediatrics recommended that all pediatricians incorporate screening for domestic violence as a part of anticipatory guidance. Preliminary results suggest that many women will reveal domestic violence when screened in the pediatric office setting. Also, a subgroup of women, those with young children who have recently separated from their partners, may particularly benefit from screening for domestic violence (96). Good screening tools exist for identifying children with developmental and psychosocial problems. Research has demonstrated that easy-to-use screening instruments can be successfully utilized in pediatric practice to identify children with special health care needs and psychosocial concerns (25, 108). The use of simple checklists about behavioral and developmental concerns also improved the communication between parents and physicians (36). This is important, given that assessment of parental concerns has been shown to be more accurate in identifying children with developmental problems than 40 clinicians’ appraisals (31). Using parent-provided information may save pediatricians’ time and improve early diagnosis of behavioral and developmental problems (88). Effective primary care services exist to address behavioral and developmental concerns and promote optimal development. A growing evidence base has led policymakers and clinicians to recognize the critical need not just to maintain, but to optimize, the health of children. Recent proposed changes in the health system, such as the Healthy Steps program, emphasize an integrated and population-based strategy to improving early childhood health, and have proven to be successful in universally increasing developmental services (38, 45). Research has demonstrated that educational interventions, offered to parents in the context of pediatric well-child visits, can be effective in enhancing parent-child interaction and targeting issues such as sleep, toilet training, discipline, and infant crying (34, 82, 117, 118). Such interventions have also been shown to promote children’s learning and increase parental competence (118). There is evidence to show that application of developmental research findings may significantly influence childhood growth and development through pediatric practice and training programs (34). Greater involvement of parents in the pediatric assessment and treatment process leads to more effective and efficient care. More patient involvement and enhanced patient-provider communications result in improved follow-up of problems and better outcomes, as perceived by patients (122). Research has shown that simple tools designed to improve communication about behavioral and developmental issues can improve the quality of care (36), and lead to more accurate identification of children with developmental problems (31, 88). Further efforts are needed to improve the ability of physicians to respond effectively to patients’ psychosocial concerns (81). Using parent-provided information may save pediatricians’ time and improve early diagnosis of behavioral and developmental problems (88). Even when considering normal developmental milestones, such as toilet training, many practical considerations from family, social, cultural, and economic perspectives significantly affect the treatment outcome for these problems. The health care professional needs to consider these different perspectives when providing advice for developmental milestones (94). 4. Primary Care Systems Recent demands for change in pediatric primary care, which call for more emphasis on preventive services, necessitate a deeper understanding of practice dynamics. 41 Rapid developments within the health care environment have led to increased pressures for change among primary care physicians and their practices (13). There is a widespread call to improve the quality of preventive and developmental services. Nevertheless, a lack of understanding of practice organization and function has limited the effectiveness of attempts to change practice behaviors (13, 49). Practices are much more complex than present strategies for change assume. Understanding the organization of primary care practices is essential for implementing changes related to delivery of preventive or other health care services (12). Physicians who wish to emphasize preventive medicine more in their practices should have an understanding of how practice characteristics (e.g. as clarity of staff roles), office systems (e.g., office efficiency) and habits (e.g. communication patterns between physicians and staff) affect the quality and patient use of the preventive services that they provide (11). An awareness of these factors is an important prerequisite for improving preventive services and maintaining these improvements permanently (11). In determining the appropriate number and duration of well-child visits, physicians must consider a number of conflicting factors. Increased ethnic diversity and provision of preventive services have been associated with an increased mean duration of child health visits. This may cause conflict with the managed care emphasis on physician productivity (26). Evidence suggests that physicians can reduce the number or duration of well-child visits for healthy, low-risk populations without detriment to the children’s health or the adequacy of care (78, 110). High-risk children, however, make half as many well-child care visits as other children, thus a slight increase in encounter time is insufficient to provide them with the same level of care as other children (10). Moreover, shorter length of well-child visits is consistently associated with lower parent satisfaction (5). Physicians and practices can increase quality-of-care scores by providing more preventive care and developmental services. Parental reports and consumer satisfaction surveys are often used to assess the quality of health care service delivery (5, 48, 49, 78). Parents consistently site unmet needs in the areas of preventive care and developmental counseling. Evidence suggests that improvement of services in these areas is associated with increased parent satisfaction, quality of care, and greater cost-effectiveness (48, 49, 101, 124). For physicians and practices seeking to improve delivery of preventive services, it is important to maintain a focus on reasonable and measurable goals (8). Fostering specific tenets of primary care, such as interpersonal communication and coordination of care, may have an impact on the delivery of preventive services and possibly other important health outcomes (124). 42 5. Innovations in Primary Care Practice Home visitation programs can reduce childhood risk factors and improve health status. Critics of the traditional approaches to well-child care call for a broader view of care that goes beyond well-child visits (1, 70, 103). A number of studies have experimented with different formats for extending well-child care beyond the traditional office visit. One of the most commonly utilized methods is home visitation, which is often used to provide case management, social support, and educational counseling on developmental, behavioral, and safety issues. This type of outreach has been shown to be effective at reducing a number of risk factors and negative outcomes, including antisocial behavior, substance abuse, household hazards, emergency department visits, subsequent pregnancies, use of welfare, child abuse and neglect, criminal behavior, pregnancy-induced hypertension, and childhood injuries (40, 42, 43, 85, 121). However, more extensive reviews of the practice of home visitation suggest that home visiting in and of itself is not sufficient to address the complicated needs of families (77) Services that address the psychosocial concerns of families are essential to effective care. Moreover, targeted home visitation programs aimed at increasing immunization rates and well-child visits for high- risk populations have often proven ineffective or not cost-effective in achieving the desired outcome (41, 92). Poor mothers, especially, may require help to resolve personal crises and survival problems before they are able to focus on efforts to improve the health of their children (121). Physicians can utilize new technologies and modes of personal communication to aid in delivery of care and improve health outcomes. Common technologies, such as telephones and the Internet, can be efficient and cost- effective tools for physicians to communicate with patients and improve delivery of care. The phone has commonly been used for adults with chronic illnesses as a way to triage patient needs, deliver health education, monitor health status, and provide case- management services (21). Phone counseling has been used to reduce infant behavioral problems (86), and a phone-based system of recorded health messages was effective in providing information about behavioral and developmental issues to parents of preschool children (21). These interventions were associated with increased parent satisfaction and decreased need for calls or physician visits. The Internet can also be a cost-effective means of providing important health information to parents, though it may be necessary for physicians to provide parents with additional guidance in order for them to access this information effectively (7). Evidence suggests simple modes of communication, such as waiting room notice boards, can be improved by incorporating new technologies (115). 43 Group well-child visits are a viable alternative to individual visits. The model of the one-to-one health supervision visit has been adopted with little evidence that it is the most effective format for providing well-child care (27). Evidence from a number of recent studies suggests that populations receiving group well-child visits were no worse off than those receiving individual visits (27, 113, 127, 128), and, in some cases, the group visits yielded preferable results, including greater coverage of the recommended health topics (83), faster recovery from postpartum depression, and improved coping skills (113). While there is no significant evidence that group well-child visits are a better method of delivering care, they are a pleasant and effective alternative (113) that does not require an increase in expenditure of time or money (27, 127). Coordination of clinical care with services provided by other community-based organizations can improve child health outcomes. More effective organization of preventive services within primary care practices and more coordination between practices and community-based agencies have been recommended as ways to improve health outcomes of children (1, 70). Studies have demonstrated that greater coordination can lead to concrete improvements in health outcomes, such as immunization rates and age-appropriate weight (66). These studies have also increased the general recognition that clinical interventions in the medical office are not the only or necessarily the most effective way to address the health and development needs of young children (103) For example, assessment and intervention in pre-schools or day care centers may offer a better venue for addressing the developmental needs of children. Despite the inherent complexities in this type of multilevel coordination, it is important for physicians who wish to improve delivery of preventive services and fully realize their potential to aid in children’s healthy development (70, 103). The current model of well-child care does not provide for an adequate level of preventive and developmental services. High rates of childhood developmental problems and their associated morbidities place a heavy burden on families. Pediatricians are uniquely poised to help families address these and other preventive issues at an early age in order to prevent or ameliorate future problems (1, 2). A number of office-based tools and guidance programs have been designed to help physicians increase delivery of important preventive and developmental services. Office-based systems, such as improvement teams and structured encounter forms, can increase house staff knowledge of developmental milestones and anticipatory guidance/ preventive care, increase preventive service delivery, and improve compliance with recommended guidelines for developmental assessment (71, 74). Comprehensive guidance programs, such as the Healthy Steps for Young Children Program, incorporate early child 44 development specialists and enhanced developmental services into routine pediatric care (30, 37). Other developmental and preventive services, such as literacy training and home/car safety counseling, can be delivered as part of routine well-child visits (6, 126). 6. Financing Primary Care Certain models of health care financing may serve as impediments to the provision of high-quality pediatric care. Managed care contracts often depend on the existence of valid, applicable research data and positive cost-effectiveness analyses. This is problematic, because research challenges specific to children have lead to a dearth of requisite evidence, thus entitling a managed care organization or other decision maker to deny coverage on the basis of unproven, negative assumptions about an intervention (68). Capitation models have been shown to inadequately compensate physicians for children with chronic illnesses (90). Conversely, private fee-for-service insurance models have been associated with an increased likelihood that a child will receive continuous care and, as a result, a greater probability that physicians will provide mothers with dental, nutritional, and developmental advice (56). A system of peer review and feedback, combined with financial incentives, can improve service delivery in pediatric practices. The findings of the National Survey of Early Childhood Health indicate marked variability in the topics and amount of time devoted to counseling or anticipatory guidance, and the types and overall quality of services provided during health supervision visits (102). One proposal to improve the functioning of the child health care system is the use of periodic peer review and feedback, combined with financial incentives. Such systems have shown mixed success in increasing delivery of various recommended preventive services, such as immunizations, cholesterol screening, and charting adequacy (15, 97, 106). Special considerations are necessary to protect children with special health care needs from the inherent disadvantages of a competitive health care market. Children with chronic illnesses are especially vulnerable in a competitive health care environment because of the higher ongoing costs associated with treating them and the inherent pressures to reduce services to manage within the capitated rate (44, 90). More children with chronic conditions are surviving than in previous times, and many have serious and significant ongoing health care needs (67). Further research is needed, as are efforts to develop a system of care that minimizes the adverse impact a competitive market has on this population. Current proposals on the table include a different form of insurance for specific medical conditions, a capitation pricing system that reflects their higher costs, as well as a delivery system that is focused on their needs (44). 45 7. Medical Home The nature of the patient-physician relationship can exert a strong influence on the quality of care provided. The role of the primary care physician (PCP) has become more central to health care with the advent of managed care. Most patients in managed care systems value their PCP as a source of first-contact care and a coordinator of referrals, and prefer to seek care from them initially. However, managed care models that emphasize the role of PCP as gatekeepers who can impede patient access to specialty care may undermine patients’ trust and confidence in their PCPs (39). The stability of the patient-physician relationship is important. Many health care settings have low rates of continuity, despite the fact that continuity of care has been associated with increased delivery of anticipatory guidance during well-child visits (3), more timely receipt of preventive services (17), better care coordination (60), and overall improvements in patient satisfaction and quality of care ratings (132). The medical home model has the potential to improve delivery of care to children. Gaps in what health care children need and what they receive highlight the lack of an integrated system of health care in the United States. Barriers to adequate care include fragmented public and private delivery systems, lack of comprehensive, developmentally appropriate services, and shortages of accessible sites, delivery systems, and appropriately trained providers. Universal access to appropriate care for children requires affordable, available continuums of care that integrate personal medical services, community-based health services with education and social programs, and agencies from both public and private sectors (19). A medical home provides care to infants, children, and adolescents that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective (46). A relationship with a medical home is associated with better health, on both the individual and population levels; with lower overall costs of care; and with reductions in health disparities between socially disadvantaged subpopulations and more socially advantaged populations. A medical home provides better effectiveness as well as more efficient and more equitable care to individuals and populations (104). Efforts are under way to establish access to community- based medical homes for all children and to use the medical home as a model for quality improvement in primary care practices (46, 55, 99,100, 104). Children with special health care needs benefit greatly from the incorporation of a medical home into their framework of care. Although managed care may improve service coordination and use of primary care, it may also threaten health outcomes for children with special health care needs (CSHCN) by 46 potentially decreasing access to the range of needed services, eroding progress in developing community-based service systems, and failing to ensure quality of care (91). There is a lack of investigation into epidemiology, clinical care and its improvement, organization, and financing of care for children with disabilities (63). As a result, few frameworks have been proposed to assess quality of care for this population of children in managed care organizations (91). The American Academy of Pediatrics, families, and other health care professionals agree that access to a medical home is necessary for CSHCN (55, 100). CSHCN benefit from care that is integrated with well-child and acute care; coordinated among specialists, therapists, and educators; and offered in a planned, anticipatory manner. Primary care practices that serve CSHCN require a practical and effective improvement method to become fully realized medical homes (100). 8. Technology for Primary Care Use of new technologies should be incorporated in the redesign of child health care. Pilot studies aimed at redesigning and improving the quality of child health care delivery have benefited from the incorporation of new technology into routine care. The electronic health record (EHR) has been introduced into a number of pediatric primary care offices and has proven effective in improving quality of care, especially in the area of preventive service delivery (51, 61, 69). Use of information technology is also proposed to help improve patient safety and reduce medical errors (76). 9. Disparities in Health Outcomes in Primary Care Substantial racial and ethnic disparities persist in children’s health and use of health services in the United States. Most efforts aimed at reducing racial and ethnic disparities in children’s health care have focused primarily on achieving equal access to primary care services. Little attention has been paid to the qualitative experience of primary care for children of different races and ethnicities (59, 64). There is evidence that racial and ethnic disparities in quality persist in many aspects of primary care delivery, and that these disparities are not simply reflections of ability to pay, health disparities, sociodemographics, or racial variations in expectations for care. Parents of minority children, in particular Asian Americans, report lower quality of primary care (64). Efforts to improve access and provide more linguistically appropriate services may help to reduce this gap. However, health plans need to pay increased attention to racial/ethnic differences in assessments of care (58, 72). 47 APPENDIX B. WELL-CHILD CARE SCENARIOS This section describes ideal models of well-child care (WCC). We have chosen eight scenarios that best describe how systems of WCC vary according to patient populations, geographic locations, or conditions for providing care. These scenarios reflect the conclusions for each of the assigned settings (e.g. rural well child care). There is considerable overlap between the different scenarios and many of the ideas represented in one scenario are applicable to other settings. Because the scenarios were developed by independent groups, there may be overlap in some of the suggested changes between scenarios. Additionally changes suggested in one scenario may applicable in other scenarios. For example if the use of the online forums for parents is presented in the suburban care scenario this does not mean it is not applicable to rural or urban care. Urban Well-Child Care An ideal WCC system for large urban practices would include universal coverage, standardized screening, and the use of developmental specialists and behavioral counselors. Universal coverage would ensure that all children are able to access care at all levels. Standardized screening would be performed in a number of settings, including homes, churches, schools, or day care centers. Children would be screened and stratified by level of risk, helping to customize their care. Children identified as “at risk” would be seen by the appropriate health care professionals. Urban practices would allow same-day appointments, implement extended visiting hours, and provide transportation for families when needed. Educational outreach, like screening, would be delivered in settings that would be accessible to families. For example, there could be “parents’ nights” at schools on anticipatory guidance, safety, and other important developmental issues. Such outreach programs would be developed through partnerships between pediatric practices and local schools and include teachers and other non-medical caregivers as educators. Parents would be encouraged to become involved in their child’s care. Larger practices would implement electronic health records and enable both health professionals and community agencies to access them. Each family would have access to their child’s personal health record through a patient portal or a portable disk. Pediatric practices would solicit feedback through parent questionnaires. Parent advisory boards would work collaboratively with practices to monitor and improve the quality of care. 48 Urban practices would extend the system of WCC to include a broad network of medical and non-medical providers. Primary care providers would track specialist referrals within and outside of their own system to ensure that there are no barriers to access, and specialists would be expected to provide a full report to the child’s primary care provider following each visit. Social workers would be readily available in pediatric offices to provide guidance and help families connect with community-based services, focusing on those identified as high risk. Interpreters would facilitate communication with families with limited English proficiency. Practices would have staff interpreters around the clock for languages that are common among their patient population and interpreters on call for less common languages. Rural Well-Child Care The small, rural WCC system would rely on the use of media (print, radio, and television) and community partnerships to facilitate access to care among geographically dispersed patient populations. These linkages would provide information and ease transitions between different aspects of WCC. For example, local newspapers could serve as valuable tools for providing health information and reminders about interventions, such as annual flu shots. It would be important for rural practices to share technology and other resources. While individual practices might not be able to hire developmental specialists, they might be able to share the costs with other practices. Similarly, new technologies could be shared among practices, creating economies of scale as well as interconnectivity. Rural practices could expand access to specialty care through the use of shared resources that would allow for telehealth visits with specialists. Rural practices would recognize that attending regular visits poses challenges to families who live far from offices. They would enable parents to schedule same-day appointments, and make the most of visits by gathering extensive health information through pre-visit questionnaires. They would develop a complexity scale to assess each family’s potential needs and plan accordingly to offer them pertinent tools and information. Because pediatricians would work as part of collaborative health care teams, they could use each family’s questionnaires to determine who should be present at the visit. For instance, care coordinators could take part in office visits for families who have children with special health care needs. Primary care offices would commonly develop service contracts with local specialists and acute care institutions to ensure that information is shared among care 49 settings. Pediatric office staff would have extensive knowledge of local resources, and make referrals based on their appropriateness to each family’s needs. For example, children with chronic illnesses, such as asthma, are likely to benefit from continuous monitoring in a community-based care setting. In this situation, the pediatrician could refer the family to a local school nurse who has expertise in asthma management. Pediatricians would also make off-site visits to schools and other community locations to accommodate families who have a hard time keeping regular office visits. Parents would be involved in the development of a customized calendar and recall/reminder system to help them become active participants in their child’s care plan. The care team would reinforce to parents the importance of continuous monitoring and management of conditions outside of the office. Parents with a high degree of knowledge about certain aspects of child health would be invited to become partners in the health care team and asked to provide education and guidance to other parents. Suburban Well-Child Care As with the ideal WCC models for urban and rural scenarios, ideal WCC in suburban settings would maximize families’ access to office-based care and develop systems for ongoing monitoring and communication. Access to office-based care is improved by revising visiting schedules to include drop-in hours for acute care and extended hours to meet the needs of working families. Social marketing would play an important role in this system, with television marketing campaigns used to attract potential families and transmit information to existing patients. Pediatric practices could use e-mail to send visit reminders to families, along with pre-visit questionnaires that would enable pediatricians to customize well-child visits according to families’ needs. The pre-visit questionnaires would enable families to tailor their visit by choosing a group visit, where appropriate, or requesting the presence of staff specialists, such as psychologists and social workers. Pediatricians would facilitate ongoing communication with families by using secure online messaging for follow-up questions and monitoring. Practices could set up Web sites with links to screened educational health resources and online forums for special interest groups. This would enable parents to learn from and support one another. Group well-child visits divided by children’s ages could encourage the formation of parent networks and information sharing. 50 Each child would have a personal health record, available online and updated at each visit to include new health information and links to relevant sites. This would enable parents to research their child’s health information from home and formulate questions or identify concerns to address with their care provider. Well-Child Care for Children with Special Health Care Needs An ideal WCC system for children with special health care needs (CSHCN) would be designed on the medical home model, the gold standard of care for such children. This system would uphold a commitment to providing care that is easily accessible, coordinated, continuous, comprehensive, culturally appropriate, family-centered, and compassionate. Care would be delivered by a health care team, with public health nurses (PHNs) at the core. Each regional primary care office would oversee a team of five PHNs, and each PHN would be responsible for the care of 40 CSHCN and their families. The PHNs would provide all of the basic WCC services, including developmental assessments, education, and immunizations. They could provide these services in schools, homes, or other community sites. The health care team would maintain a high level of communication with the overseeing primary care office, as well as with multiple subspecialty providers. In this way, PHNs would be able to act as care coordinators, making referrals in accordance with children’s health care needs. The PHNs in each team would work collaboratively, frequently calling on one another for advice and information. Telehealth technologies would provide convenient means for “virtual consults” among PHNs, facilitating communication and the transmittal of health information, such as test results. Technology would enable physicians to provide live consultations and assessments, even for offsite visits. All team members would have online access to their patients’ electronic medical records. By depending on PHNs to provide the basic aspects of WCC, physicians would be able to devote more time to children’s acute care needs. Physicians could also focus on other areas of care for CSHCN, providing consultation and training for teachers and child care providers on systems issues and working with parents and others to address issues that arise as CSHCN interact with other health care providers as well as schools and community programs. Parents’ active involvement in their child’s care would be vital. To facilitate communication and support networks among parents, each health care team would create a parent advocacy group. All families would be given a laptop computer, which they could use to communicate with the health care team or parent group, access their child’s 51 electronic medical record, and look up Web-based health information. Although the cost of providing families with laptops as durable medical equipment would be considerable, this technology would be likely to result in savings as part of an integrated system of WCC. Well-Child Care Using Home Visits The home health visit system, like many of the scenarios for WCC, would use a team- based model of care that includes multiple specialists. While office-based care would remain important, this system would make home visits by PHNs the cornerstones of care, both for healthy and at-risk children. A nurse’s role would begin before the child is born, with a home visit after the 20- week ultrasound. This initial visit would be arranged by the primary care physician, in conjunction with other members of the health care team, and would focus on anticipatory guidance for parents, based on the results of the ultrasound. For instance, if the ultrasound suggests a developmental abnormality (e.g., spina bifida), then the visiting nurse would be prepared to discuss the implications of this diagnosis, design a plan for the child’s care, and answer any questions the parents might have about their child’s condition. The prenatal visit also would provide an opportunity for the health care team to learn about the family. The nurse would assess environmental and psychosocial factors for the health care team to consider in determining the child’s level of risk and developing a customized care plan. Finally, the prenatal visit would help to establish a trusting and comfortable relationship between the nurse and family. Since the visiting nurse would play a central role in this system, the strength of this relationship would be fundamental to the successful delivery of future WCC. If families feel apprehensive about inviting nurses into their homes, visiting nurses would make it clear that their role is to be helpful and supportive, rather than judgmental. The visiting nurse would maintain a link with the family throughout the child’s childhood and through adolescence, providing assistance during key developmental milestones. For instance, the nurse would make a home visit before the anticipated birth date to offer guidance on the birthing process and the transition from hospital to home. Other visits would address toilet training and entry to preschool. At each visit, the nurse would perform assessments, provide needed education and training, and help the family to identify necessary resources. The nurse also would provide basic well-child services, such as immunizations and screenings, and coordinate visits with the primary care physician and other members of the health care team. 52 In this way, the visiting nurse would facilitate WCC as well as care for children with acute or chronic health care needs. Physicians would be better able to perform their role because of the relationship that exists between the visiting nurse and the family. The nurse would be a valuable source of information for all members of the health care team. Practices could hold weekly office meetings with home visitors and other providers to discuss positive developments in each child’s condition and stay informed about the progress of their care. Providers would also strive to involve parents as members of the health care team. Practices would design campaigns aimed at involving families, particularly targeting those at risk or with CSHCN. Direct communication between parents and providers would be facilitated by phone and e-mail, and the internet would be used to connect parents and providers with community-based resources. Other technological tools, such as electronic monitoring devices and Web-based tracking programs, would be used in day care centers, schools, and other community sites to allow the nurse and other members of the health care team to continuously monitor children’s health and development. Lowest-Cost Well-Child Care The ideal model for low-cost WCC would begin with universal coverage. Universal coverage would lower overall costs by ensuring access to basic medical and preventive services for all children and reducing the need for high-cost critical care. Further cost reductions would be achieved by breaking away from the face-to-face clinical office visit and increasing the efficiency of care provision. Certain aspects of WCC, such as developmental screenings, anticipatory guidance, and risk identification, would move out of the clinical office into malls, schools, libraries, or other community settings. The low-cost model would also make use of alternative providers, such as pediatric nurse practitioners, and medical assistants, and to deliver some of the basic well-child services. This would broaden the spectrum of care available to families, as each provider contributes a unique point of view and skill set. Moreover, dividing responsibilities for WCC among a team of providers would take the onus off of physicians to deliver a complete package of well-child services during office visits. This would allow them to use visit time more efficiently and focus on critical care. The overall cost of WCC would be lowered due to increased efficiency and the use of lower- cost providers. Parents would be involved as active partners with their providers through practice- based discussion groups, stratified by children’s age. These groups would give parents with 53 children at similar developmental stages a forum in which to discuss WCC and anticipatory guidance and speak with providers about these issues. Individual parents could volunteer to be trained as peer educators, providing information and guidance to other parents. These groups could take the form of group visits for WCC or discussion groups with parents and child experts. Providers would work with parents to develop customized visit schedules, based on their expressed needs and determined level of risk. These schedules would eliminate unnecessary visits from the general periodicity schedule for “low-risk” families, and help physicians target additional services for families with special needs. In both cases, the customized schedules would enable providers to deliver more efficient and effective care. Providers would use information technology to achieve a number of cost savings. Common formats, such as CD-ROMs, DVDs, and e-mail, would be used to transmit educational information to a large number of families at minimal costs. Cellular phones and e-mail would provide ways for parents and providers to communicate and send visit reminders. Such simple and inexpensive tools would obviate the need for some office visits and significantly reduce the number of missed visits, thus lowering costs for individual practices. The cost benefit of more widely disseminated educational and preventive information would be immeasurable. Collaborative partnerships would be another important facet of low-cost WCC. As discussed above, providers would use a variety of community sites to deliver well-child services. Commercial entities could be involved: Wal-Mart could offer subsidies for parent education and even provides space in their stores for parent classes. Health care providers could partner with public access and commercial television stations to develop and broadcast programs aimed at informing parents. Such programs could provide parents with general information about child development and help them prepare for visits by highlighting key issues and questions. These partnerships would be mutually beneficial for all parties: they would generate positive publicity for the commercial entities, increase access and “buy-in” among parents, and lower operating costs for providers. Innovative Well-Child Care This model would cast aside many of the old standards for WCC, replacing them with innovative systems that appeal to parents, children, and providers. Perhaps one of the most innovative proposals would be the relocation and redesign of the clinical office. Physicians’ offices would be located in malls, making them more convenient for families. Offices would cater to patients, with office “greeters” welcoming families, forming personal bonds 54 with them, and providing education. Healthy refreshments and ample entertainment would be available to children. For example, games could be played which are educational with children being rewarded with redeemable coupons for healthy foods. Practices that serve multicultural populations would celebrate this diversity by decorating their offices with a “United Nations” theme. All practices would strive to create a “pain-free” office, using new technologies to make medical procedures as pleasant and non-invasive as possible. Technological tools would be used to monitor children’s health status. The medical industry has developed a line of wearable sensors that can continuously monitor health data such as heart rate, pulse, and even substance use. Such “smartware” sensors are advanced enough to monitor important markers of illness that typically require a blood sample, and could thus form an integral part of the “pain-free” medical system. Technology could also create links between patients, providers, and payers in order to make the medical insurance system pain-free for both patients and providers. All medical offices use a coding system for patient symptoms and illnesses. This information would go directly into patients’ electronic health records (EHRs), which would be accessible to their insurer. These informational linkages would allow insurers to operate on a “one-bank” system, in which patients use debit cards to pay for each office visit and payers transfer the appropriate funds to the patient’s personal account almost immediately. Payment amounts would be determined by the codes input by providers and the indicated patient copayments. The ICPC system could also use updated patient information to identify important “teachable” moments and topics for anticipatory guidance. Simple video access using a computer and webcam or a low cost videophone enabling providers to schedule “virtual visits” and regular check-ins with patients. This audio and video access would also be the basis for an advanced care coordination system that providers would use to schedule referral appointments during patients’ visits. Innovative WCC would introduce the concept of the primary care provider as a multidisciplinary team, including professionals from many different specialties. The provider team would be held to a high standard of excellence, supported by continuous staff training and adequate reimbursement for services. The multidisciplinary nature of the team would enable members to learn from one another, simply by working in tandem. Knowledge sharing would be furthered through continuous medical education, which would take place in the form of monthly staff meetings to discuss different topics in WCC. Providers would also learn from their patients by taking cues from practice-based family panels. The provider team would work closely with parents and other community 55 members to improve WCC and extend services beyond the clinical office. Local schools would be integrated into the spectrum of care through, for example, developmental screenings in kindergarten classrooms or use of high school students as peer educators for younger students. Providers would work collaboratively with local newspapers and public access television stations to disseminate educational information to the community. High-Tech Well-Child Care Technology could be used in many ways to improve WCC. Technology would expand access to care, create platforms for information transfer between parents and providers, and offer new formats for education and service delivery. Pediatricians would make ample use of the Internet as a teaching resource because it is easily accessible and familiar to many parents. Of course, not all Web sites include reliable information, so pediatricians would offer lists of vetted Web sites to families. Practices could set up online “baby books” for each child, including personalized information about their medical history and developmental milestones. These baby books would contain links to vetted Web sites, which parents could follow to learn more about specific issues or developmental changes. Baby books could follow children throughout their lifespan from infancy through adolescence, tracking their personal growth and development and supporting parents with information and reminders. Parents could use e-mail to communicate questions or concerns to their physicians, and physicians could reply with specific answers or requests for more information. Parents could provide physicians with details about their child’s health and development through online profiles, which could be linked to their baby books. For instance, if parents are concerned about their child’s sleep patterns, their pediatrician might request that they use the profile to track their child’s sleep hours and temperament over a designated period. The profile could also prompt parents to input information about issues that might be affecting the child’s sleep. Often, physicians would be able to make a detailed recommendation based solely on such information—reducing the need for office visits. Web-based monitoring and feedback systems would also be valuable tools for dealing with ongoing health problems. Technology would make WCC visits as convenient and comfortable as possible. In non-critical cases, families who have computers with webcams or videophones could opt for a telehealth visit, allowing them to consult with their physician from the comfort of their own home. Both telehealth visits and office visits could be scheduled using online systems. 56 All pre- and post-visit information would be entered into a child’s electronic health record, which could be accessed by the primary care physician and a number of other providers. This type of access would be particularly useful in situations where primary care physicians decide to call on specialists for help. Primary care providers would utilize an advanced decision-support system to garner expert knowledge from a variety of specialists, enabling them to offer parents the best and most up-to-date care. Electronic health records would be linked with other databases, such as school records, so that pediatricians could communicate with key contacts and ensure that children receive all necessary screenings and services. School faculty and other community members would play an important role in making sure each child is healthy and thriving. Public sites, such as schools, libraries, churches, and day care centers, would offer community kiosks that provide internet access to online health resources and tools. Such kiosks would be particularly useful for families who do not have Internet access at home. 57 APPENDIX C. WELL-CHILD CARE CHANGE IDEAS: READINESS FOR IMPLEMENTATION Change Ideas Requiring Change Ideas Ready for Change Ideas Requiring New Technology or Implementation Additional Resources Policy Development Assign children into risk Provide advanced access; Give parents access to vetted categories and customize their ensure that visits can take Web sites; automatically direct screening and developmental/ place on the day requested them to sites from electronic preventive services or personal health records Focus well-child care visits Use public health nurses or Create interactive health care with the help of structured other child health information programs to teach assessments prior to the visits professionals to make home child development and health visits promotion skills; possible partnerships with media companies Use of parents as consultants Use multidisciplinary teams Send group e-mails or text to answer questions and to ensure families are offered messages with health impart information broad range of services, information, e.g., allergy alerts including developmental and mental health services Enable parents of children Deliver screening and Install kiosks at places of with special health care needs developmental and employment or other central to partner with practices, preventive services at locations to provide participate in planning care preschools and day care information about community centers resources Pediatricians serve as Forge partnerships between Create electronic health consultants to schools, practices and communities records linked to regional community agencies, and agencies for population-based health information other settings initiatives, such as obesity organizations to track prevention outcomes and perform needs assessment Give parents customized Enable “one-stop shopping”: Use electronic prompts and calendars with schedule and co-location of health, mental reminders for clinicians and description of well-child visits health, education, and social parents to ensure appropriate (like tear-off tickets for services and timely well-child care mortgage payments or car maintenance) Set up specific office hours for Perform population-based Set up Web-based tracking/ behavioral and developmental screening in schools, monitoring systems linked to a problems churches, or community child’s electronic health agencies to identify health record, e.g., immunization care needs registry, specialty referrals, and disease management Use a care coordinator in Use a personal health record conjunction with team- derived from an electronic directed care health record 58 RELATED PUBLICATIONS Publications listed below can be found on The Commonwealth Fund’s Web site at www.cmwf.org. The Deficit Reduction Act of 2005: An Overview of Key Medicaid Provisions and Their Implications for Early Childhood Development Services (October 2006). Sara Rosenbaum and Anne Markus. Setting the Stage for Success: Implementation of Developmental and Behavioral Screening and Surveillance in Primary Care Practice (July 2006), Marian F. Earls and Sherry Shackelford Hay. Pediatrics, vol. 118, no. 1 (In the Literature summary). Brief Maternal Depression Screening at Well-Child Visits and The Timing of Maternal Depressive Symptoms and Mothers’ Parenting Practices with Young Children: Implications for Pediatric Practice (July 2006). A. L. Olson, K. T. McLearn et al. Pediatrics, vol. 118, no. 1 (In the Literature summary). Returning to the Basics: A New Era in Pediatric Education (May 2006). Aaron Friedman, Edward L. Schor, Bonita Stanton, Bruder Stapleton, and Barry Zuckerman. Archives of Pediatrics and Adolescent Medicine, vol. 160, no. 5 (In the Literature summary). Preventive Care for Children in the United States: Quality and Barriers (April 2006). Paul J. Chung, Tim C. Lee, Janina L. Morrison, and Mark A. Shuster. Annual Review of Public Health, vol. 27 (In the Literature summary). Improving the Delivery of Health Care that Supports Young Children’s Healthy Mental Development: Early Accomplishments and Lessons Learned from a Five-State Consortium (April 2006). Neva Kaye. How States Are Working with Physicians to Improve the Quality of Children’s Health Care (April 2006). Helen Pelletier. Maternal Depressive Symptoms at 2 to 4 Months Post Partum and Early Parenting Practices (March 2006). Kathryn Taaffe McLearn, Cynthia S. Minkovitz, Donna M. Strobino et al. Archives of Pediatrics and Adolescent Medicine, vol. 160, no. 2 (In the Literature summary). Studying and Tracking Early Child Development from a Health Perspective: A Review of Available Data Sources (February 2006). Brett Brown, Martha Zaslow, and Michael Weitzman. State Approaches to Promoting Young Children’s Healthy Mental Development (November 2005). Jill Rosenthal and Neva Kaye. EPSDT: An Overview and How Medicaid and EPSDT Promote Healthy Child Development Among Children with Special Health Care Needs and Comparing EPSDT and Commercial Insurance Benefits and EPSDT and Children’s Coverage Costs (September 2005). Sara Rosenbaum et al. How Medical Claims Simplification Can Impede Delivery of Child Developmental Services (August 2005). Anne Markus, Sara Rosenbaum, Alexandra Stewart, and Marisa Cox. The Role of States in Improving Health and Health Care for Young Children (July 2005). Vernon K. Smith. Quality of Preventive Health Care for Young Children: Strategies for Improvement (May 2005). Neal Halfon, Moira Inkelas, Melinda Abrams, and Gregory Stevens. Using External Quality Review Organizations to Improve the Quality of Preventive and Developmental Services for Children (May 2005). Henry T. Ireys, Tara Krissik, James M. Verdier, and Melissa Faux. 59