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  • Preparing for Health Care Transition Services for Young Adults with Special Health Care Needs HRTW National Resource Center Brief www.hrtw.org Kathy Blomquist, Richard Antonelli, Patience White, Betty Presler, Patti Hackett, Ceci Shapland In 2002 the American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP) and American College of Physicians-American Society of Internal Medicine (ACP-ASIM) endorsed the Consensus Statement on Health Care Transition for Young Adults with Special Health Care Needs that was drafted by a group of experts at an AAP invitational meeting supported by the federal Maternal and Child Health Bureau1. In 2003 the Society of Adolescent Medicine endorsed the Consensus Statement and further recommended promotion of overall wellness and ongoing education of patients, families, providers and advocacy groups about the need for transition planning, while engaging the adult health care sector to make services available, develop “best practices”, and eliminate processes and policies that restrict transition2. The purpose of this study was to identify, five years after publication of the Consensus Statement, the extent to which pediatricians, especially those involved in medical home model initiatives, had adopted practice structures and processes that facilitate health transition for youth with special healthcare needs and to determine the areas in which they wanted help. Methods The Healthy & Ready to Work (HRTW) National Center staff in consultation with the American Academy of Pediatrics Center for Medical Home Initiatives used Donabedian’s3 conceptual framework to create a questionnaire reflecting the structures, processes and outcomes implied by the Consensus Statement. The questionnaire was sent to physicians involved in medical home projects (MCHB, CATCH, and NICHQ-funded) and was posted on AAP’s Medical Home listserve and HRTW website in fall 2006 through spring 2007. The 1
  • questionnaire and summary results are available at www.hrtw.org/hrtwu/research-data or from the authors. Results Respondents included 52 practices from 26 states including 41 primary care pediatricians, 6 pediatric sub-specialists (developmentalists, neurologist, orthopedist, and geneticist), 4 Med-Peds and 1 Family Physician. Structures: Less than half (46%) of respondents were familiar with the Consensus Statement. Only 46% reported having a policy for transfer of YSHCN out of pediatrics; 63% had a specific practice to which they sent young adults with special needs to continue primary care, most often based on personal relationship or location. Influencing transfer were insurance, specific diagnoses, similar hospital systems and agreements with specific practices as well as age and patient readiness. Only 21% of practices had a policy to discuss legal responsibility for medical decisions and health records at age 18; others discussed medical decision making, often in the context of guardianship. Processes: Table 1 (on page 8) describes the transition processes physicians used based on the steps of the Consensus Statement and where they wanted help. Practices state they particularly want help with coding for reimbursement, using forms and educational materials to promote transition, developing portable medical summaries, writing health care transition plans, and ensuring continuous health insurance. The survey asked how practices obtained health-related transition information: 44% got information through self-directed research, 40% through staff-based care coordinators, 33% through family-to family support, 23% through state Title V CYSHCN programs, and 17% did not know where to turn for assistance. The websites of the HRTW National Resource Center and the AAP’s National Center for Medical Home Initiatives offer transition information; yet only 17% had used www.hrtw.org and 52% had used www.medicalhomeinfo.org. 2
  • Outcomes: Six practices (12%) tracked outcomes related to youth with special health care needs who transitioned out of their pediatric practices, usually as part of a condition-specific initiative. Outcomes tracked included having adult health care and insurance, engagement in work and community, quality of life, utilization of services such as ER visits or hospitalizations, financial hardship borne by families/youth, patient/family satisfaction with adult health care, and provider satisfaction. Ratings of transition services: Respondents rated their practices on implementation of transition processes: 13% said they had the desired transition processes in place in their practices; 19% were about halfway, 25% said their practices are just beginning transition processes, 29% said they have no transition processes in place but were interested, and 2% (1 practice) expressed no interest. Forty percent of practices reported they have expanded their transition services in the past two years with formalized assessments, planning, and educational tools; more staff; use of resources; and recruitment of adult providers. Discussion Despite the limitations of a convenience sample, the results suggest that the Consensus Statement, medical home, and other national policy initiatives are having a positive impact on practice. However, the gap between policy and practice around transition continues, and practitioners want assistance to prepare youth to meet the standards of the Consensus Statement. Less than half of respondents were familiar with the Consensus Statement and/or have a policy about transitioning youth out of their pediatric practices. More than 30% of practices want help with recruiting adult providers, using office forms to support transition, coding, planning for emergencies, writing transition plans and portable medical summaries, providing educational materials and transition skill building opportunities, and ensuring continuous health insurance. McDonagh and colleagues4 similarly found that 43% of rheumatology health professionals in adolescent health and transitional care in the United Kingdom reported education needs especially in 3
  • the area of transition issues (models, programs, planning, and interagency coordination) and informational resources (leaflets, websites, organizations). Findings from larger and more recent surveys of parents and physicians confirm that progress in meeting the care standard of the Consensus Statement is being made slowly. Lotstein and colleagues5 analyzed the results of transition-related questions from the 2005-6 National Survey of Children with Special Health Care Needs6. They found that only 41.2% of the over 18,000 parents with youth aged 12-17 with special needs interviewed reported that health care providers talked comprehensively about meeting health care needs in adulthood. Parents were questioned about four aspects of health transition. For the component measures, parents who reported that a discussion would not have been helpful were not considered in the calculation for that component measure. Findings were that the majority of physicians encouraged their children to take responsibility for their care (78%) and discussed future adult health needs (62%). However, only 42% had discussed future adult providers and 34% discussed changes in health insurance. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the probability of meeting the transition core outcome. Burke and colleagues7 surveyed primary care pediatricians in Rhode Island. Only 13% had written policies on transfer of youth to adult care, 50% provided written summaries for youth with special needs to adult providers, and only 3% indicated that transition should begin in early adolescence as recommended by the Consensus Statement. A 2008 American Academy of Pediatrics survey8 with 628 respondents from across the US found that fewer than half of pediatricians are providing transition support services. Only 25% offered educational materials, 38% made individualized health transition plans, 41% discussed insurance options, 53% assisted with creating a portable medical summary, 53% provided consultative support to family and internal medicine physicians, 60% discussed consent and confidentiality issues prior to age 18, and 66% assisted with medical documentation for program eligibility. Few respondents initiated transition planning early 4
  • with 62% beginning transition planning at age 18-20. Barriers are consistently described in studies as: difficulty breaking the bonds between pediatricians and youth and their parents, fragmentation of the system, and lack of available family physicians, specialists, community resources, insurance reimbursement, and staff time. In one of few published studies with the goal of understanding the concerns of adult health care professionals regarding transition for young adult patients with childhood-onset conditions, Peter and colleagues9 surveyed internists from the 2000 American Board of Medical Specialties directory in two stages. Concerns elicited in stage 1 were clustered into 6 categories: patient maturity, patient psychosocial needs, family involvement, providers’ medical competency, transition coordination, and health system issues. In stage 2, of a list of 45 concerns, those rated highest by these internists who were experienced in caring for young adults with special needs were lack of training in congenital and childhood-onset conditions, lack of family involvement, difficulty meeting patients’ psychosocial needs, needing a super-specialist, lack of adolescent training, facing disability/end-of-life issues during youth and early in the relationship, financial pressures limiting visit time, and families’ high expectations. Internists clearly stated the need for better training in congenital and childhood-onset conditions, training of more adult subspecialists, and continued family involvement without compromising the young adult patient’s growing sense of independence. They also identified concerns about patients’ psychosocial issues and maturity, as well as financial support to care for patients with complex conditions. Financial pressures often are considerable in internal medicine practices, and internists often are unfamiliar with documentation and coding strategies that could procure more reimbursement for their efforts with time-intensive cases. Educating internists about these strategies would likely lessen the financial disincentive for accepting young adult patients with chronic illnesses. Internal medicine practices may lack social workers and case managers, who are common in pediatric practices and are essential in addressing patients’ psychosocial and care coordination needs. Internists in this study agreed that meeting 5
  • patients’ psychosocial needs was essential, but they acknowledged barriers to achieving this goal, including insufficient knowledge of social resources, limited training in adolescent medicine, time limitations, and financial considerations. The Washington State Department of Health10 found similar issues when they surveyed primary care providers who see adult patients in Washington in 2009 with education and experience and access to professional resources through the internet, successful collaboration with specialists, involved families and caregivers, practice changes such as longer appointment times and other accommodations, and reimbursement skills helping practices. The Rhode Island Office of Special Healthcare Needs11 and the New Hampshire Special Medical Services12 surveyed physicians caring for adults in 2006-2008. Fewer than half of the respondents communicated with previous providers for young adults; 90% of the adult health care professionals wanted a written transfer summary, support from specialists, and a conversation about the YSHCN with the pediatric clinicians. In 80% of the adult practices, less than 10% of the patient population was 18-25 and only 5% of those had SHCN, so many clinicians were inexperienced and uncomfortable treating young adults with pediatric- onset complex conditions. To promote transition planning and effective transfer of care from pediatric to adult- oriented providers, HRTW has developed a one-page checklist, printed on page 9, and available from the authors and at http://www.hrtw.org/hrtwu/research-data.html. This checklist addresses the core knowledge, skills and policies that align with the 6 Critical First Steps in the Consensus Statement. The HRTW (www.hrtw.org) and AAP Medical Home (www.medicalhomeinfo.org ) websites provide example transition programs and resources and forms that can be adapted by practices. State Title V Children with special needs programs, Family to Family Health Information Centers, condition-specific organizations and family and youth leadership groups disseminate model policies and information (see www.championsinc.org for state information). 6
  • From an early age, physicians need to talk to youth and their families about the future, preparing for adulthood and leading a quality, healthy life. Physicians can take a proactive role and talk to youth about taking responsibility for their health care. Building skills overtime is imperative. Identifying steps for children to begin to learn responsibility and understanding about their own health such as expecting them to ask questions at appointments, asking them about their medications and side effects, calling for appointments and refilling prescriptions will begin the process. From an early age, the doctor can model expectations for building in the child as a partner in their own health care along with their family and health providers. The 2007 Joint Principles of the Patient Centered Medical Home13 promote coordinated and integrated care across all elements of the complex health care system. Transition knowledge and skills should be incorporated into pediatric, med-peds, internal medicine and family physician residency programs and continuing education programs and self-directed learning opportunities for practicing physicians and office staff. By implementing the Consensus Statement’s Critical Steps pediatric practices can help youth with special health care needs acquire the knowledge, skills, abilities, and attitudes to co- manage health issues and navigate adult systems and services to realize healthy, productive and meaningful lives. 7
  • Table 1: Transition Consensus Statement knowledge and skill variables and requests for help % % Variables Doing Wanting Help Step 1: Having an identified health care professional who attends to the unique challenges of transition planning Recruit adult primary care /specialty providers to assume care of youth with 56% 31% special needs Support adult providers willing to assume care of young adults with complex 64% 29% health care needs with education and/or experiences in your practice Step 2: Identifying core knowledge and skills required to provide developmentally appropriate health care transition services Want information on coding for reimbursement for transition services 88% Use office forms to support transition processes 29% 77% (particular interest in Electronic Medical Record forms) Provide educational materials related to transition 39% 48% Provide or refer to transition-related mentoring, support and skill building 50% 35% programs (such as camps, recreation, activities of daily living, volunteer or paid work experiences Help youth/families plan for emergencies 58% 31% Provide care coordination for youth with complex conditions 92% 29% Promote independence of health condition management, self care and 63% 29% prevention of secondary disabilities Assist with school/work accommodations 68% 21% Assist with SSI medical documentation and/or redetermination 75% 19% Refer youth/families to community resources/public benefits 79% 15% Step 3: Preparing and maintaining an up-to date medical summary that is 35% 42% portable and accessible Step 4: Creating a written health care transition plan by age 14 34% 48% Step 5: Applying the same guidelines for primary and preventive care for all 75% 25% adolescents and young adults Screen or assess to identify YSHCN who need transition services 60% 29% Step 6: Insuring affordable, continuous health insurance coverage for all young people with special health care needs throughout adolescence and 43% 33% adulthood 8
  • CHECKLIST FOR TRANSITION: CORE KNOWLEDGE & SKILLS FOR PEDIATRIC PRACTICES www.hrtw.org POLICY STATEMENT - A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs (PEDIATRICS Vol. 110 No. 6 December 2002, pp. 1304-1306) http://aappolicy.aappublications.org/cgi/content/full/pediatrics;110/6/S1/1304 This checklist addresses one of the critical first steps to ensuring successful transitioning to adult- oriented health care: the need for core knowledge and skills required to provide developmentally appropriate health care transition services to young people with special health care needs. The HRTW National Resource Center believes these skills apply to all youth with and without a diagnosis. POLICY YES NO 1. Dedicated staff position coordinates transition activities. 2. Office forms have developed to support transition processes. 3. CPT coding is used to maximize reimbursement for transition services 4. Legal health care decision making is discussed prior to youth turning 18. 5. Prior to age 18, youth sign assent forms for treatments, whenever possible. 6. Written transition policy states age youth should no longer see a pediatrician. MEDICAL HOME 1. Practice provides care coordination for youth with complex conditions. 2. Practice creates an individualized health transition plan before age 14. 3. Practice refers youth to specific family or internal medicine physicians. 4. Practice provides support and confers with adult providers post transfer. 5. Practice actively recruits adult primary care /specialty providers for referral. FAMILY/YOUTH INVOLVEMENT 1. Practice discusses transition planning with families/youth before age 10. 2. Practice provides educational packet or handouts on transition. 3. Youth participate in shared care management and self care (call for appt/ Rx refills). 4. Practice assists families/youth to develop an emergency plan (health crisis, weather, or environmental disasters). 5. Practice assists youth/family in creating a portable medical summary. 6. Practice assists with planning for school and/or work accommodations 7. Practice assists with medical documentation for program eligibility (SSI, VR, college). 8. Practice refers family/youth to resources that support transition and skill-building: mentoring, support, camps, recreation, activities of daily living skills, volunteer or paid work experiences HEALTH CARE INSURANCE 1. Practice is knowledgeable about state mandated insurance benefits for youth post 18. 2. Practice provides medical documentation when needed to maintain benefits. SCREENING 1. Exams include routine screens for risk taking and prevention of secondary disabilities 2. Practice teaches youth how to identify their health and wellness baseline. The HRTW National Resource Center is headquartered at the Maine State Title V CSHN Program and is funded through a cooperative agreement (U39MC06899-01-00) from the Integrated Services Branch, Division of Services for Children with Special Health Needs (DSCSHN) in the Federal Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA), Department of Health and Human Services (DHHS). Activities are coordinated through the Center for Self-Determination, Health and Policy at the Maine Support Network. The Center enjoys working partnerships with the Shriners Hospitals for Children and the KY Commission for CSHCN. The opinions expressed herein do not necessarily reflect the policy or position nor imply official endorsement of the funding agency or working partnership 9
  • References: 1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1301-1335 Supplement. Accessed March 11, 2009, from http://aappolicy.aappublications.org/cgi/content/full/pediatrics;110/6/S1/1304 2. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33:309-311. 3. Donabedian A. The quality of care. How can it be assessed. JAMA. 1988;260:1743-1748. 4. McDonagh JE, Southwood TR, Shaw KL. Unmet education and training needs of rheumatology health professionals in adolescent health and transitional care. Rheumatology. 2004;43:737-743. 5. Lotstein DS, Ghandour R, Cash A, McGuire E, Strickland B, Newacheck P. Planning for health care transitions: results from the 2005-2006 National Survey of Children with Special Health Care Needs. Pediatrics. 2009;123:e145-e152. The National Survey of Children with Special Health Care Needs data is available from the Data Resource Center for Child and Adolescent Health, www.cshcndata.org. 6. National Survey of Children with Special Health Care Needs http://cshcndata.org/DataQuery/SurveyTopics.aspx 7. Burke R, Spoerri M, Price A, Cardosi A, Flanagan P. Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clinical Pediatrics (Phila). 2008;47:347-354. 8. McManus,M, Fox H, O’Connor K, Chapman T, MacKinnon J. Pediatric perspectives and practices on transitioning adolescents with special needs to adult health care. Fact Sheet No. 6, October 2008. The National Alliance to Advance Adolescent Health. Accessed March 11, 2009 from http://www.incenterstrategies.org/facts.html 9. Peter N, Forke C, Ginsburg K, Schwarz, D. Transition from pediatric to adult care: Internists' perspectives. Pediatrics, 2009; 123:417-423. 10. Washington State Department of Health, Division of Community and Family Health, Office of Maternal and Child Health, Children with Special Health Care Needs Program, July 2009, Primary Care Providers’ Perspectives on Serving Young Adults with Special Health Care Needs. Available at: http://www.doh.wa.gov/cfh/mch/documents/PCPreportJuly09.pdf 10
  • 11. Rhode Island Department of Health Office of Special Healthcare Needs. Adolescent Transition and Transfer to Adult Healthcare, November 2007. Available at: http://www.health.ri.gov/family/specialneeds/transition/needsassessment.php 12. New Hampshire Special Medical Services Title V /CSHCN. Survey of adult health care providers about health care transition for youth with special health care needs. See http://www.nhps.org/default.htm or contact Kathy Higgins Cahill at kcahill@dhhs.state.nh.us 13.American Academy of Family Physicians (AAFP), American Academy of Pediatrics (AAP), American College of Physicians (ACP), American Osteopathic Association (AOA) (2007) Joint Principles of the Patient-Centered Medical Home. Available at http://www.pcpcc.net/node/14 Authors: Kathleen B. Blomquist, RN, PhD Consultant, HRTW National Resource Center HRTW Consultant, Kentucky Commission for Children with Special Health Care Needs 333 Waller Avenue, Suite 300, Lexington, KY 40503 Phone: (859) 252-3170 or (859) 276-3924 Fax: 859-225-7155 E-mails: kathyblomquist@hrtw.org or kathyb.blomquist@ky.gov Healthy & Ready To Work National Resource Center website: www.hrtw.org Richard C. Antonelli, MD, MS, FAAP Medical Director, Children's Hospital Boston Integrated Care Organization (CHICO) Associate/ Interim Medical Director, Physicians' Organization, Dept of Med, Brook House, Ste 205C, 77 Pond Avenue, Brookline, MA 02445 Phone: (617) 919-4269 E-mails: richard.antonelli@childrens.harvard.edu or richantonelli@hrtw.org Patience H. White, MD, MA, FAAP Medical Consultant, HRTW National Resource Center Chief Public Health Officer, Arthritis Foundation, Washington, DC pwhite@arthritis.org Betty Presler, ARNP, PhD Consultant, HRTW National Resource Center Nurse Practitioner, CP Coordinator, Shriners Hospitals for Children, Lexington, KY bpresler@shrinenet.org Patti Hackett, MEd Co-Director, HRTW National Resource Center, Natick, MA pattihackett@hrtw.org Ceci Shapland, RN, MSN Consultant – Family/Youth Leadership, HRTW National Resource Center, Vadnais Heights, MN cecishapland@hrtw.org ACKNOWLEDGMENTS 11
  • The survey was funded by the Maternal and Child Health Bureau’s (MCHB) Cooperative Agreement U39MC00047 (Healthy & Ready to Work National Center); writing was funded by MCHB Cooperative Agreement U39MC06899-01-00 (HRTW National Resource Center). Many thanks to the physicians who completed their surveys; MCHB HRTW Project Officers Tom Gloss, Dr. Monique Fountain, Scott Snyder, Elizabeth McGuire, and Lynda Honberg; Lauri Levin and Stephanie Skipper at the AAP; and HRTW colleagues Toni Wall, Debbie Gilmer, Trish Thomas, Theresa Glore, and Mallory Cyr for their assistance. April 13, 2010 12