Issue Brief March 2017 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs by Kris Calvin, Megumi Okumura, MD, and Heather Knauer Introduction for children with special health care needs, and about systemic changes that would facilitate How can families of children with special health their future participation in medical homes for care needs (CSHCN) be assured that their these children. children are receiving appropriate care? Research shows that when these children Research Overview/Methods receive their care in a medical home, they have better access to services, improved quality of The first phase of the study involved focus care, and reduced healthcare costs.1 Yet only groups and individual interviews with key 38% of families in California report that their informants regarding pediatric care for children child with special needs has a medical home. with special health care needs. (The second phase was a quantitative survey of California’s The concept of the “medical home” was board-certified pediatricians, the results of introduced by the American Academy of which are reported in Survey: Quantifying Pediatrics as a way to assure better care for Pediatricians’ Views on Caring for Children children with chronic health conditions.2 It was with Special Health Care Needs.) first described as a centralized, physical location for a child’s medical records, but has evolved to Participants a model of team-based care designed to address A total of 39 purposively selected key the totality of care a child needs, and as such is informants representing important stakeholder accessible, family-centered, coordinated, categories across California participated in the comprehensive, continuous, compassionate, and focus groups or interviews. Twenty-eight of the culturally effective.3 39 participants were pediatricians; the To better understand what is preventing greater remaining 11 were parents, nurses, and other availability of medical homes, a collaboration of experts in the care of children with special pediatric organizations in California,4 along health care needs. Thirty-one individuals with representatives from family organizations participated in one of nine hour-long focus and children's advocacy groups, conducted a groups; eight of the informants were two-phase study asking the state’s pediatricians interviewed individually for 30-45 minutes. about their experience and willingness to care Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health The majority of pediatrician participants (who 5. Do you know of any model practices that included equal representation of men and provide high-quality care for CSHCN and if women) were practicing in primary care. Seven so, what makes them model practices? had practices comprising 50 percent or more children with special health care needs; 9 Analysis reported 15-35 percent CSHCN; 6 reported 10 All focus groups and interviews were conducted percent or less. Most had been in practice for via webinar or by phone, recorded (with between 10 and 25 years. The majority of permission of the participants), and transcribed. pediatrician participants practiced in urban communities, with five in suburban areas. Two Key Findings identified as practicing in rural areas. Practice Participant responses yielded considerable settings, incompletely reported, included overlap in discussion across prompts. For hospital and medical schools (6), small group of example, “time”—for visits, for care 3-10 MDs (4), HMO (3), large groups of >10 coordination, for all the things a pediatrician and MDs (2), community health centers (2), and a practice must do to provide quality care for multispecialty group (1). children with special health care needs—came Interview Guide up in discussions of key elements, barriers, and resources. That is, “time” was clearly on The focus groups and interviews were semi- pediatricians’ minds regarding care for this structured. Core areas of focus for policy population, regardless of how the question was development were offered as prompts, with framed. This was true of other frequently interactive discussion among participants mentioned themes as well. For this reason, encouraged. major themes/key findings are presented in terms of topic area rather than organized by 1. What are key (essential) elements needed to prompt. provide high-quality care for children with special health care needs? Reimbursement Rates 2. What are barriers to providing high-quality One key barrier noted by respondents is care for children with special health care reimbursement rates for primary care needs? physicians, which are often set at levels that incentivize high-volume practice—discouraging 3. What are solutions, facilitators, and supports practices from assuming care for patients whose for providing high-quality care for children conditions require above average visit times and with special health care needs? the assistance of additional staff.1 At the same 4. What do you feel is the appropriate “lead time, pediatric subspecialists have increased as a provider” for a medical home/locus of care proportion of all pediatricians, and the for a child with special health care needs? differential between their fees and those of primary care providers has grown. 2 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health Diminution of the role of community physicians track follow-up care, and complete paperwork, in hospitals also has changed how primary care billing, and coding. physicians spend their time, reducing their opportunities to interact with hospital-based Care Coordination specialists, especially in tertiary care centers. Respondents reported that it is essential that These changes raise questions about what the someone on staff be able to devote the time roles and relationships should be between needed to know all aspects of the child’s care, primary care and subspecialist pediatricians in including medical, developmental, educational, the care of children with chronic health and social service needs, and to communicate conditions today, and how the system must and coordinate among all those serving the child change to support and strengthen that and family. This capacity was identified as one partnership. of the most important facilitators of high-quality care for children with special health care needs. Time and Care Coordination Resources Respondents emphasized that this person does Time not need to be a pediatrician or even a medical provider. Small group and solo practices Two elements repeatedly emerged as essential (approximately 20% of California for the provision of quality comprehensive pediatricians), in particular, lack sufficient health care for CSHCN: resources to hire dedicated care coordinators. In these practices, care coordination falls to the Sufficient time for visits and administrative physician and existing staff, who rarely can needs devote the time needed. Robust care coordination/communication Medical Record Systems Several primary care pediatricians reported that practices increasingly must maintain high visit Medical Record Systems that “talk to one volume in order to remain financially viable. another” often were noted as an important Children with special health care needs do not feature of care coordination. Respondents fit easily into this praised electronic medical record (EMR) “What makes it difficult systems that are easy to access, both on- and as a pediatrician to business model because off-site, and allow for the seamless and provide this care? Lack their visits may take instantaneous two-way transfer of information of time, number one.” longer, yet providers are not reimbursed for between different care providers. This facilitates more than the “usual visit.” Striving to provide “real-time” access “I don’t know how we good care, pediatricians may extend the visits to medical records did this before and lose revenue, or, in academic settings, ”steal by the primary care electronic medical time” designated for other responsibilities; provider and care records.” neither approach is sustainable. In addition to coordinator, the need for longer visits to address multiple alleviating problems such as delayed specialty issues in sufficient depth, added administrative visit reports and the resulting dependency on time was noted as essential to handle referrals, parents to recount subspecialty visits. 3 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health The best EMR systems also allow pediatricians hospital-based special clinics, or integrated to follow up with patients immediately after systems like Kaiser, are the optimal medical hospitalizations, respondents said. They also home for most children with complex medical noted that enhanced EMR systems allow needs, arguing that “no amount of money is pediatricians to share lab results, images, and going to solve the problems of caring for EKGs. Such systems facilitate informal and children with special health care needs in the formal consultations with subspecialists, community.” They noted, however, that some allowing the subspecialist to respond to or ask geographic regions, particularly rural settings, for clarification from a general pediatrician’s cannot support a children’s hospital or special consultation request without having to bring the needs clinic, so community pediatricians must patient in for a visit. be equipped and supported to take on the care coordination role. Locus of Care/Team Leader “For families, it’s not None of the Having a pediatrician lead the child’s health fair if they don't have a respondents care team in a medical home was deemed highly generalist physician to suggested that ask about everything in important. Given that respondents were largely subspecialty one place.” pediatricians, it is not surprising that they pediatric providers identified access to “one of their own” as should be the “default” medical home for essential (as opposed to, for example, a family CSHCN. They reasoned that subspecialists are physician or general practitioner). However, not prepared or trained to be primary care respondents also repeatedly emphasized the providers, and that they lack the necessary need for that pediatrician to be knowledgeable, infrastructure for well-child care such as comfortable, and interested in caring for vaccination. Their focus tends to be narrowly on children with special needs, i.e., not just any the child’s medical issues that fall within their pediatrician would do. To broaden the subspecialty expertise. However, respondents availability of qualified pediatricians, acknowledged that there are specific situations respondents stressed the importance of in which the subspecialist could or should serve continuing medical education for pediatricians as the medical home, such as when a child has in the skills and knowledge needed to care for one specific overriding health need, and spends CSHCN, including when (and when not) to refer most of his/her time in the subspecialist’s office. to subspecialists. Several pediatricians supported this notion Respondents also differed as to who would be particularly for children with cancer, who may the optimal team leader for the medical home then return to the care of the primary care for children with special health care needs. Most pediatrician when their need for intensive primary care pediatricians indicated that, given subspecialty care has resolved, diminished or the right support, they should be the medical stabilized. home for all children, including those with Respondents strongly agreed that the family, in complex special needs. They stated that they are consultation with their child’s health care trained to “quarterback” the health care team. providers, should have the ability to choose the Others recommended that university- and 4 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health type of provider and the setting in which their University of California, Irvine (UCI); and child’s needs will best be met, to the extent University of California, San Diego (UCSD). possible. These systems share common elements such as a whole child focus, and utilize a health care Respondents offered competing explanations team incorporating not only primary care and regarding why pediatricians might lack interest subspecialty physicians, but also allied health in caring for CSHCN. In some cases, this may and other non-physician professionals such as be due to the considerable system barriers that social workers, education specialists, and legal need to be overcome, e.g., time, care aides. Although some of these clinics are coordination, availability of subspecialists, and advanced primary care medical homes, many so on. Were these addressed, additional are disease- or condition-specific, caring for pediatricians might want to be the medical home children with spina bifida, autism, cystic for children with special health care needs. fibrosis, hematologic or oncologic disorders. However, a subset of pediatricians reported going into primary care because they are most Kaiser Permanente was highlighted by interested in preventive care and serving typical pediatricians both within and outside of that children, and feel CSHCN are better served in system as an example of a care model that is specialty care clinics. Respondents differed as to designed to provide comprehensive care. It was whether “resources” or “interest” is the lauded for its “universal coverage” system, in dominant root of the problem. which a general pediatrician doesn’t have to seek out referrals and can access almost all Model Practice services “in-house”—greatly reducing access Respondents were asked to identify model barriers to both subspecialty and mental health practices that serve special needs populations. providers. A few free-standing practices in Many small and solo community primary care Northern and Southern California also were practitioners were unable to name any such identified as model practices, but seemed to be practices; some were unaware of existing chosen only for the willingness of the providers models close to them. Pediatricians who were to care for CSHCN, not the practice able to identify a model characteristics that made it a model. “For complex children, system or practice almost Subspecialists: Availability, Relationships, the right team working universally cited and Professional Cultural Divide together is really integrated systems of important but it's a care: university- or Subspecialty access concerns fell primarily into struggle for a hospital-based clinics three categories: (1) health plans that seem not community doctor to established specifically to appreciate the need for pediatric get there.” for children with special subspecialists and limit their provider networks health care needs, including clinics at University almost exclusively to adult specialists; (2) of California, Los Angeles (UCLA); University inadequate numbers of available pediatric of California, San Francisco (UCSF); Lucile subspecialists in a region, especially in rural Packard Children’s Hospital Stanford; UCSF areas; and (3) reimbursement inadequacy for Benioff Children’s Hospital Oakland; pediatric subspecialty care in public programs, 5 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health leading to shortages in the pipeline for personally knowing subspecialists and other California pediatric subspecialists and, care providers can facilitate referrals and therefore, long-term consultations, especially if these activities are “There’s nothing in the structural shortages. enabled and incentivized or reimbursed. system today that fosters informal or One ongoing source of Primary care pediatricians also suggested that ongoing interaction frustration and concern having access to practice guidelines and between subspecialists expressed about quality authoritative answers to frequently asked and primary care of care was the lack of questions about chronic conditions would be pediatricians.” communication helpful, perhaps via a user-friendly website between subspecialists and/or telephonic expert hotline. Availability of and primary care pediatricians and the child’s such resources could help primary care medical home. Inconsistent record-keeping pediatricians know when to seek subspecialty methods and incompatible electronic medical advice and to whom to make referrals. record systems were cited as problematic. But “Half of what I do in beyond these specific communication issues, Obtaining primary care with mental/behavioral more broadly speaking it was reported that there these kids is to is little in the current structure of health care health services for interpret for the family delivery to facilitate, foster, or incentivize the their patients and what was said at the interaction of general and subspecialty communicating with specialist’s office.” pediatricians in the community. Most pediatric those providers was subspecialists participate in separate continuing identified as especially problematic. This medical education from their primary care situation seemed to be aggravated by health colleagues, and identify largely with their insurers carving out mental health coverage and individual subspecialist professional excluding primary care pediatricians from associations. Over time, this has meant informal providing reimbursable behavioral/mental communication and “collegiality” between health services. These circumstances combined subspecialists and primary care pediatricians prevent pediatric patients from accessing have diminished. specialty care and interfere with primary care pediatricians’ ability to fill the gap of This “culture-communication gap” has made inaccessible child and adolescent mental health formal relationships between primary care services. Given the high rate of co-morbidity pediatricians and subspecialists more difficult to among CSHCN, problems accessing establish and maintain. Respondents suggested behavioral/mental health care are especially that joint continuing medical education could be important. used to start conversations between general and subspecialty pediatricians about how to better Non-Medical Resources collaborate, when general pediatricians should Formal linkages and positive relationships make referrals for subspecialty care, and what between the child’s medical home and other new treatments are available for CSHCN. community services providers—schools, Primary care pediatricians emphasized that Regional Centers, family resource centers, and 6 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health support groups—often are essential for quality children’s health conditions in a variety of ways. care for children with special health care needs. They can provide organizational tools such as This support was especially critical for children calendars, “passports,” and clinical notebooks, from families with fewer resources. and suggest other ways to organize home care. Respondents said repeatedly that, in addition to Further, providers can facilitate communication funding, effective care coordination requires with families via telephone and email, and strong personal relationships across these telehealth systems can help to determine entities, and the ability to communicate across whether an in- “The primary care health and service agencies. Knowing whom to person visit is pediatrician gets to know call and being assured that the person will return needed, potentially each child and family your calls are two equally important avoiding stress for over time, it’s that prerequisites. the family. continuity that matters.” Similarly, In California, many CSHCN access services and providing information such as appointment resources through Regional Centers and reminders by mail or email, and printed care California Children’s Services (CCS). Pediatric guidelines and information sheets was identified providers highly value these programs. as helpful, as long as such assistance is in the However, variations in eligibility guidelines and language and at the educational level service availability make it difficult for appropriate for the family. In addition, pediatricians to know which children qualify for respondents noted that the health care team which services. Respondents also reported needs to take into account the families’ social barriers for children in obtaining timely access circumstances, including cultural values and to Regional Center services. In addition, beliefs, access to various resources and denying responsibility for providing or paying supports, employment and income, ability to for services leads to children being bounced cope with stress, need for respite services, and among schools, Regional Centers, CCS, and distance to sources of care. insurers, and frustrates families and health care providers who are endeavoring to provide high- Insurance, Health Plans, and Reimbursement quality care and a medical home. Respondents stressed that health plans that are Family Education and Support streamlined in approval processes, have adequate networks of pediatric subspecialists, Multiple informants noted that practices benefit and that cover support services, durable medical when they educate and empower parents to be equipment, and needed medications contribute active participants in their child’s care, to achieving quality care for children with encourage them to speak up about their special health care needs. Respondents reported concerns, and educate providers about that some health plans do much better in this community resources with which they have regard than others. Bringing all health plans up interacted. to the level of the highest performers would do a Respondents suggested that pediatricians can great deal to improve the system in California support families’ capacity to manage their and the quality of care provided. 7 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health Respondents disagreed over whether insurance qualitative phase of this study was supported by coverage and benefits for CSHCN are generally the results from the survey phase. But in better in private sector plans or public sector addition, within the private and collegial setting programs. Some argued that while benefits and of small focus groups and interviews, coverage may be richer in Medi-Cal and some pediatricians were willing to take their analysis “The kind of other public programs, to a more personal level, and to consider what insurance a child reimbursement is might be done in their own profession to has determines inadequate and impedes increase medical home access. This included what referrals I can access. Respondents also addressing the gap between primary care make.” discussed the need to make pediatricians and pediatric subspecialists that sure benefits are appropriately designed, and has occurred in continuing education and that children’s hospitals and all child health care professional networking activities. Pediatricians providers are reimbursed adequately for the care also reflected on whether and to what extent they provide for special needs populations. their provision of medical homes for CSHCN might be increased were more resources made Conclusion available, versus enhancing the knowledge, Pediatricians were open and thoughtful in skills, and expectations of pediatricians more responding to this opportunity to express their comfortable in a “wellness-based” practice. views regarding the system of care for children In this study, pediatricians and other key with special health care needs, including the role stakeholders identified a number of themes they feel they should play and the challenges central to providing medical homes to CSHCN. they face. Many of these topics merit further research and Increased and dedicated resources for care discussion on how to best utilize existing coordination at the practice level topped the list resources and to craft new policies that would of systemic improvements that pediatricians substantially improve the system of care for this said are needed to assure all CSHCN had access important and especially vulnerable group of to high-quality medical homes in their children and their families. community. This conclusion from the 8 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health 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. Agrawal R, Shah P, Zebracki K, Sanabria K, Kohrman C, Kohrman AF. Barriers to care for children and youth with special health care needs: perceptions of Illinois pediatricians. Clin Pediatr (Phila). 2012;51(1):39-45. 2. American Academy of Pediatrics Ad Hoc Task Force on Definition of the Medical Home: The medical home. Pediatrics. 1992;90(5):774. 3. Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. Pediatrics. 2005;116(5):1238-1244. 4. Participating organizations included the American Academy of Pediatrics, California Foundation; the American Academy of Pediatrics, California; the Children's Specialty Care Coalition; and they University of California, San Francisco 6. Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. Pediatrics. 2005;116(5):1238-1244. 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 9 Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs