Issue Brief March 2017 Survey: Quantifying Pediatricians’ Views on Caring for Children with Special Health Care Needs by Kris Calvin, Megumi Okumura, MD, and Heather Knauer Introduction physicians themselves about what prevents them from providing medical homes for children with Children, especially those with chronic health special health care needs. conditions, benefit from receiving pediatric care that comprehensively addresses their medical, To address this issue, Little research has behavioral, and psycho-social needs. a collaboration of queried physicians pediatric themselves about what Children with special needs who receive this organizations in prevents them from type of coordinated care in a family-centered California, along providing medical medical home1 have better access to needed with representatives homes for children with services, improved quality of care, and reduced from family special health care health care costs. needs. organizations and However, most children with special health care children’s advocacy needs (CSHCN) are not cared for in a medical groups, conducted a research study to define and home. California does especially poorly in this better understand pediatrician-identified barriers regard, with only 38.3% of families reporting to caring for these children. their child with special needs having a medical Participating organizations included the home.2 American Academy of Pediatrics, California Ample evidence, both qualitative and Foundation; the American Academy of quantitative, indicates that what parents and Pediatrics, California; the Children’s Specialty guardians desire for their children with special Care Coalition; and the University of California, needs matches precisely what a medical home San Francisco. can offer. Unfortunately, insufficient numbers of pediatric and other physician practices Research Overview/Methods operate on the medical home model. The researchers first conducted a literature Numerous explanations for this shortage have review of pediatric care of CSHCN. The been proposed, including a fragmented system, findings indicated that few studies have looked legal and policy barriers, low levels of physician at the proportion of pediatric patients with reimbursement, and inadequate supports for special health care needs who are cared for in practices. But little research has queried Survey: Quantifying Pediatricians’ Views on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health individual practices, or the way practices that Key Findings successfully care for CSHCN are structured. Over half (50.2%) of the pediatricians Subsequently, focus groups and semi-structured responded to the survey (1290/2569). Analysis interviews were conducted with 39 purposively of the data yielded six key findings: selected key informants to identify additional issues and to prioritize those that should be The CSHCN cared for in California studied further. pediatric practices represent a wide range of conditions and severity. University-affiliated The focus group participants were practices provide a higher proportion of the predominantly primary care pediatricians, but care for CSHCN. Somewhat unexpectedly, also included pediatric subspecialists, nurses, many non-university-affiliated practices also and others. They identified a number of care for children with complex medical interrelated themes affecting practices’ and conditions, including some who are practitioners’ ability to serve CSHCN. The most technology dependent and some with serious common issues were: (1) time for visits, (2) behavioral disorders. (Primary care staffing needs, and (3) care coordination physicians reported an average of capacity, both in terms of systems of approximately 5% of CSHCN in their communication (e.g., shared Electronic Medical practice with technology dependence.). Records) and designated staff. These topics formed the basis of a statewide survey of active Primary care pediatricians overwhelmingly California AAP member fellows. That 10- (>90%) responded that the primary medical minute survey was administered between May home should be with the general 2014 and January 2015 via email and mail. pediatrician, with some rare exceptions. These exceptions included views that the A unique aspect of the survey was the inclusion primary care medical home should be nested of one of four randomly assigned vignettes of a within specialty care centers or be the joint child with special health care needs, along with responsibility between primary care and a series of questions to respondents about their subspecialty care. comfort level and ability in providing care for the child in the vignette they received. Vignettes Although the majority of general included a 10-year-old with a medical condition pediatricians report being fully comfortable (neurofibromatosis) or a behavioral condition caring for children with special health care (autism). In each, the child had either adequate needs, depending on the vignette a or inadequate social resources, in terms of the significant number reported being only family’s functioning and access to community somewhat comfortable (18-37%) or being services and other support. Respondents also somewhat or strongly uncomfortable (8- were asked to identify those resources that they 16%), depending upon the types of service deem most important to their practice’s ability needs and the family’s circumstances. to provide care for a child with special health care needs. Families’ circumstances were an important factor. The proportion of pediatricians 2 Survey: Quantifying Pediatricians’ Views on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health stating they were comfortable being the to subspecialty consultation than their medical home for the child in each vignette pediatricians had. (neurofibromatosis or autism) dropped by 10-13% when there were fewer social Care coordination was the resource most resources available to the child. often cited by respondents as necessary to care for children with special health care Less than half of the primary care needs. This was true for both case vignettes, pediatricians (46%) and subspecialists i.e., complex medical issue or behavioral (38%) strongly agree with the statement “I issue. The rank order of resources needed to am satisfied with the care I am able to facilitate care for the complex medical case deliver to most of the children with special was as follows: health care needs in my practice.” • Support staff for case management/care Subspecialty access was identified as a coordination; barrier to primary care pediatricians’ • Reimbursed time for longer visits; delivery of care to children with special • Ability to make informal consults and health care needs; the magnitude of the contacts with subspecialty providers barrier varied by subspecialty. (email, phone consultation or telemedicine); Nearly two-thirds of primary care • Electronic medical record system that pediatrician respondents report that links with pediatric subspecialty developmental/behavioral pediatricians and providers. pediatric psychiatrists/psychologists are not easily available to their patients. Close to The rank order of resources needed to half report that referrals to pediatric facilitate care for the behavioral case was as subspecialists in genetics and dermatology follows: are difficult. One-third report that pediatric • Support staff for case management/care pulmonologists are not easily available to coordination; their patients. In addition, a significant • Readily available community level proportion of pediatricians report that the resources (e.g., Regional Center, Family following pediatric subspecialties are not Voices) for patients and their families to easily available to their patients: pediatric meet their social/home needs; endocrinologist (26%); pediatric • Reimbursed time for longer visits; gastroenterologist (25%); pediatric • Readily available treatment guidelines infectious disease (27%); pediatric for patients with specific neurologist (30%). Pediatrician access for diagnoses/conditions, e.g., autism, consultation to all types of subspecialists is developmental delay. difficult for pediatricians who practice in rural areas (depending on the subspecialty, While support staff for care/case 10-59% of respondents reported having no management and adequate reimbursement access). Overall, patients had greater access for longer visits are deemed important 3 Survey: Quantifying Pediatricians’ Views on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health resources for both the autism and pediatric practices to ensure that neurofibromatosis vignettes, facilitating subspecialty access and the case access to, and communication with, management required for specialty needs subspecialists is identified as essential for can be uniformly available to all CSHCN management of the complex medical case. across the state. Community resources and treatment Lower levels of families’ social resources guidelines are considered core elements in (family support) adversely affect how the support of case management for comfortable a pediatrician feels in being the behavioral cases. primary medical home for a child with Put another way, for children with chronic special needs. medical problems, pediatricians look to their Recommendation: Identify and address medical colleagues (subspecialists) for families’ non-medical needs as part of any support, while for behavioral issues they care coordination process offered through prefer community resources and the state and federal CSHCN programs or standardized guidelines. private insurance plans, particularly for families in poverty/low-income, to enhance Policy Recommendations support for families and their pediatricians Primary care pediatrician respondents in caring for their child. reported overwhelmingly that they want to Access to developmental and behavioral be the medical home for children with special pediatricians and mental health care health care needs. providers for CSHCN is clearly lacking Recommendation: Include primary care across California. pediatricians in policy conversations and Recommendation: Develop and implement decisions regarding systems of care so that ways to integrate behavioral and they can contribute to solutions that permit developmental health care into medical them to fulfill that role and, in so doing, care settings for children with special make it possible for more CSHCN to have health care needs, including in primary care their care coordinated locally, where they pediatric practices. live and go to school. Rural pediatric practices disproportionately Enhanced resources for care coordination lack subspecialty and medical support was identified by both primary care and resources to provide care for the children subspecialty pediatricians as the most with special needs in their communities. important factor in permitting them to Recommendation: Develop telemedicine provide family-centered medical homes for and regionalized, shared supports to CSHCN. improve access to subspecialty resources Recommendation: Pilot and implement on and complex medical care in rural areas a broad scale care coordination and that have limited access to pediatric- subspecialty supports for community-based specific resources. 4 Survey: Quantifying Pediatricians’ Views on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health Primary care and subspecialty pediatricians tertiary care center system; to care for these report the need for readily available children requires a financing mechanism that community resources for their patients. aligns with the severity of the child’s illness Currently, communications between primary and/or the time required for care. care practices and outside entities, such as Recommendation: Develop coverage and schools and Regional Centers, are payment policies that are sufficiently inadequate. flexible (such as case mix adjustment for Recommendation: Develop innovative payment or resource allocation) to allow practices and policies to facilitate cross- practices to individualize the care of disciplinary communication and care CSHCN to achieve better quality of care, coordination, such as with school nurses or health outcomes, and family satisfaction. administration. The range of complexity and needs of Also see: Challenges and Joys: Pediatricians children with special needs is wide, with Reflect on Caring for Children with Special many primary care physicians taking care of Health Care Needs medically complex children outside of a Megumi J. Okumura, MD, MAS, FAAP, is associate professor of pediatrics and internal medicine at the University of California, San Francisco Kris Calvin is the president of the American Academy of Pediatrics, California Foundation Heather Knauer holds a PhD in health policy from the University of California, Berkeley References 1. American Academy of Pediatrics Medical Home Initiatives for Children With Special Needs Project Advisory C. Policy statement: organizational principles to guide and define the child health care system and/or improve the health of all children. Pediatrics. 2004;113(5 Suppl):1545-1547. 2. Child and Adolescent Health Measurement Initiative. National Survey of Children with Special Health Care Needs. Data Resource Center for Child and Adolescent Health. http://childhealthdata.org/browse/survey/allstates?q=1901 ABOUT THE FOUNDATION: The Lucile Packard Foundation for Children’s Health works in alignment with Lucile Packard Children’s Hospital and the child health programs of Stanford University. The mission of the Foundation is to elevate the priority of children’s health care through leadership and direct investment. The Foundation is a public charity, founded in 1997. The Foundation encourages dissemination of its publications. A complete list of publications is available at http://www.lpfch.org/publications CONTACT: The Lucile Packard Foundation for Children’s Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301 cshcn@lpfch.org (650) 497-8365 5 Survey: Quantifying Pediatricians’ Views on Caring for Children with Special Health Care Needs