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Explore the challenges and strategies in transitioning adolescents with special health care needs to an adult medical home. Learn about the significance of transitional health care and the differences between transition and transfer in the medical system.
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Building a Better Bridge: Transitioning Adolescents/Young Adults with Special Health Care Needs to an Adult Medical Home. Oscar Taube, MD Coordinator, Adolescent Medicine Medical Director, Pediatric OPD Herbert and Walter Samuelson Children’s Hospital at Sinai October 3, 2013
Why is a pediatrician giving Internal Medicine Grand Rounds?
Learning Objectives • 1. To identify 3 obstacles to making a successful transition from a pediatric to an adult medical home. • 2. To describe 3 actions the pediatric office can take to make a successful transition from a pediatric to an adult medical home. • 3. To describe 3 actions the adult medical care office can to take to make a successful transition from a pediatric to an adult medical home.
What is Transitional Health Care? • “The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from a child-centered to an adult oriented health care system. “ • -A Position Paper of the Society for Adolescent Medicine, 1993.
Consensus Statement from AAP/AAFP/ACP-ASIM • “Transition in health care for young adults with special health care needs is a dynamic, lifelong process that seeks to meet their individual needs as they move from childhood to adulthood….It is patient centered, and it’s cornerstones are flexibility, responsiveness, continuity, comprehensiveness and coordination.” • -Pediatrics Dec. 2002.
Transition vs. Transfer • “Transition readiness is the capacity of the adolescent and those in his/her primary medical system of support…to prepare for, begin, continue and finish the transition process. In contrast, transfer is a discrete event.” • Tuchman LK, Schwartz LA, Sawicki GS, Britto MT: “Cystic Fibrosis and Transition to Adult Medical Care.” Pediatrics 2010; 125; 566-573
AAP Council on Child and Adolescent Health, 1988 • Age Limits of Pediatrics: • “The purview of pediatrics…begins prior to birth…and continues through infancy, childhood, adolescence and young adulthood, when the growth and developmental processes are generally completed. The responsibility of pediatrics may therefore begin with the fetus and continue through 21 years of age.”
Age Limits of Pediatrics, continued • “There are special circumstances (e.g.a chronic illness and/or disability) in which…the services of the pediatrician may continue to be the optimal source of health care past the age of 21 years.” • (My italics).
A Case Study, with 2 Endings: • S.C., 21 y.o. AA male w. sickle cell disease. • Dx’d in early infancy • Followed, since early infancy by primary care doctor, and Peds Hematology • Hx. numerous VOC’s (now diminishing in frequency); Rx’d occasionally via ER/Ward admissions; Rx’d mostly as outpatient • Has consistently received: appropriate sickle cell meds/immunizations/organ monitoring (Nephrology, Ophthalmology, etc.).
Follow up scenario #1 • S.C. now followed by adult primary care doctor and adult hematologist • Occasional VOC’s are Rx’d, in similar fashion, by his doctors. Rare ER visits/admissions • Receives: appropriate sickle cell meds/immunizations/organ monitoring
Follow up scenario #2 • S.C. has neither an adult primary care provider, nor an adult hematologist • For several years (until age 25) Peds Hematology would admit him from ER with VOC’s. • Now, only contact with medical system is ER visits, for VOC’s. Frequently suspected, by ER staff, of drug seeking behavior. • Receives: NO sickle cell meds/immunizations/organ monitoring.
Who are these adolescents/young adults with special health care needs ?
Life Expectancy: Sickle Cell Disease Life expectancy Courtesy of John Reiss
Life Expectancy - Cystic Fibrosis Life expectancy Today, more than one-half of all persons with cystic fibrosis are over the age of 21.
The Triumph of Medicine • 1. >90% of chronically ill children survive past their 20th birthday. • 2. Example: 1970’s, 1/3 of spina bifida patients survived beyond age 20; 2000’s: >80% do. • 3. Example: Projected that individuals with CF born in 1990’s will live until their 40’s; current birth cohort will live into their 50’s.
The Triumph of Medicine, continued • Example:“For those beginning antiretroviral therapy after 2003, recent estimates predict a survival time of at least another 40 years beyond the initiation of antiretroviral therapy.” • -Dowshen N, D’Angelo LD: “Health Care Transition for Youth Living with HIV/AIDS.” Pediatrics 2011, 128(4) 762-771.
500,000 Children with Special Health Care Needs turn 18 every year [and therefore, most of them reach age 21]. • Newacheck & Taylor (1994)
Youth Aging Out of Foster Care:Problems They Face • Lack of Family Support • Educational Deficiencies • Employment/Income Problems • Inadequate or inappropriate living arrangements • Medical/Dental/Mental Health Problems • Lack of Health Insurance (This problem is hopefully…solved)
Youth Aging Out of Foster Care:Solutions • Internists/Family Practitioners Taking on Their Primary Care as Young Adults! • The Fostering Connections to Success and Increasing Adoptions Act of 2008:States must work with youth to develop a transition plan within 3 months prior to “aging out.” • ACA: “All youth aging out of foster care are eligible for Medicaid coverage, regardless of income. • -AAP “Health Care of Youth Aging Out of Foster Care.” Pediatrics 2012; 130; 1170-1173
The Key to Understanding the System for Adolescent to Adult Health Care Transition…. • In most cases, there is no system.
There is no system… • Among pediatric providers: • 33% have a policy to transition youth • 29% have an identified person in their office with knowledge and skills to focus on transition • 31% have created a transportable medical record for these patients • 5% have created individualized transition plans. HRTW survey, 2005.
[Among the polled primary care providers] “there was no common response when asked how they identify adult providers. Among the range of answers, the pessimistic response ‘luck’ may summarize the predominant approach.” • - Scal, P. “Transition for Youth with Chronic Conditions: Primary Care Physicians’ Approaches.” Pediatrics 12/02
Patient’s/Family’s difficulties with transition • Dispatches from the front…..
“We have received no assistance in this transition. Everything we have set up has been parent initiated.” • “There must be an easier way to get an 18 year old diabetic patient out of pediatric care.” • “It appears that we are being dumped by the pediatricians who have brought us this far.” • “I do not want to make this transition…I am very afraid.”
Transition from Pediatric to Adult Care: Internists Perspectives • Peter NG, Forke CS, Ginsburg KR, Schwarz DF • Pediatrics 2009; 123: 417-423 • From: Craig-Dalseimer Division of Adolescent Medicine, Children’s Hospital of Philadelphia, and Division of General Internal Medicine, University of Pennsylvania School of Medicine.
Questions asked c. 250 Internists • 1.”Please list concerns you have about accepting the care of medically complex patients as they transition from child-centered to adult-centered care….Please consider patient, family, clinical, institutional, financial and psychosocial issues.” • 2. After issues collected, Internists asked to rank these issues (1-45).
The Top 10 Internist Concerns: • 1.Internists may not have training in congenital and childhood chronic illnesses to prepare them to manage these patients beyond childhood. • 2.It is difficult to care for patients with CP or MR if the family does not stay involved. • 3.It can be difficult to meet the psychosocial needs of young adults, especially those with chronic illness.
Top 10 Internists’ Concerns • 4. Some patients may need a superspecialist to manage complex problems (e.g. complex congenital heart disease). • 5.Internists often lack training in adolescent medicine, adolescent development, and adolescent behavior. • 6. It is often difficult to face disability/end of life issues at an early age/early in doctor patient relationship.
Top 10 Internists Concerns • 7. Managed care/financial considerations limit the time an internist is able to spend with transitioning young patients. • 8. Families have high expectations of amount of time/attention needed for proper care. • 9. Because patients with chronic illness are less mature than their healthy counterparts, they may have increased adherence problems. • 10.Young patients are not always ready to assume decision making responsibility.
Survey of Internal Medicine Attendings, House officers Sinai Hospital 2013 • Many physicians “Not at all comfortable” or “not comfortable” with care of patients with: ADD/ADHD, Anorexia Nervosa, Congenital Heart Disease, Cystic Fibrosis, Kawasaki’s Disease, Spina Bifida. • Only “somewhat comfortable” with Juvenile DM, Down Syndrome, Hodgkins/NHL, Leukemia (ALL/AML), Sickle Cell Disease, Intellectual Disability. • >50% of physicians felt need for further education on mgmt of these “grown up pediatric diseases”.
General Principles of Successful Transfer of YSHCN • 1. Transition is a process, not an event. • 2. It should begin at the time of dx of YSHCN. • 3. Coordination is Key-includes: Health/vocational/educational/social service systems • 4. The roles of all involved will change as the process unfolds- especially the role of the YSHCN! • 5. Self-determination skills should be encouraged and taught throughout the process. • -White, P. AAP Textbook of Adolescent Medicine, 2010.
Culture of Care: Pediatric Provider • Family-centered • Developmentally oriented (School and life progress) • Nurturing, high level psychosocial support • Interdisciplinary • Involve parent direction and consent • Flexible • The best way to care for patients, right?...Maybe.
Culture of Care: Adult Provider • Individual-based care (not family) • Disease focused (not developmentally) • Cognitive approach • Multidisciplinary (rather than interdisciplinary) • Requires patient to be autonomous and function independently • From ‘Coming of Age with Diabetes – Patients’ views of a clinic for under 25 year olds’
Barriers to Successful HCT A Surprise Factor • Learn how to terminate long-term, emotionally laden relationships – a framework in which to say ‘goodbye’. Pediatricians make it more difficult for the family/youth to move into adult system by continuing to nurture and be available. • Answer? Graduation certificates; Transition awards
Barriers to Successful Health Care Transition – Youth/Family • Little family awareness & knowledge of HCT • Lack of preparation of youth for HCT • Adult oriented medical providers lack of knowledge of childhood onset chronic conditions • Transition often prompted by age or behavior rather than readiness • Differences in Child and Adult Medicine Health Care Transition Study: 34 focus groups and interviews with youth/young adults, family health care providers (Institute for Child Health Policy)
Health Transition Issues, from the YSHCN patients, themselves • 1. Learning to stay healthy • 2. Getting a good doc who treats adults • 3. Having family members who expect me to be a responsible adult. • 4. Figuring out what accommodations I need, and how to ask for them. • 5. Finding out what could happen if my condition gets worse. • 6.Finding out what to do in an emergency. • 7. Figuring out how to get health insurance. • National Youth Leadership Network. 2002.
AAP’s Community Access to Child Health (CATCH) grant • Goal: To Improve Adolescent to Adult Medical Home Transfer in Park Heights Community: • Will create focus groups composed of: Community organizations; Adolescents/young Adults; parents/caretakers; Clinicians; Disease specific advocacy organizations • Will use the knowledge gained from these focus groups to create an optimal transition program to Adult Medical Care for Young People with Special Health Care Needs who live in the Southern Park Heights Community.
First, Consider: Developmental Tasks of Adolescence and Young Adulthood • Separate from parents • Develop a healthy self-image • Set & achieve education & vocational goals • Financial independence • Independent living • Marriage – Partnership • Participate in community life • Be happy – intact mental health John G. Reiss, PhD
Then, consider psychosocial problems of chronically ill adolescents • Perception of Body Image • Coping With Sexual Feelings • Adherence to Therapeutic Regimens • Establishing Self-Responsibility • Establishing Vocational Direction • Coping with Death.
What Can Parents Do? • Assess Teen’s Knowledge of Disability-fill in the gaps • Teach Teen How to Take Responsibility for Meds/Reason for Meds/How to Refill • Teach Teen to call Clinician when signs/sx’s need medical attention • Discuss long term course of health condition • Allow teen to go to doctor alone!
What can Internists Do?-(reflecting on Peter et.al. article) • Improved residency/post residency training in care of “grown up” pediatric diseases • Improved training in adolescent/young adult psychosocial development • Is there something magical about the pediatric cut-off age of 21….nope! Should Pediatricians hang on to these patients longer? In many cases…yes! • Identify a transition staff member in office; better billing approaches to the care of these patients. • Adopt the Woodward “LEAVE” model (or better termed, “Accept” model) in caring for patients.
Transition: Woodward, MD “LEAVE” Model • L-Emphasize Life skills • E-Educate patient about disease, financial implications, community supports • A-Advocate for the patient with providers, support agencies • V-Pay attention to Vocational concerns • E-Stress importance of Empowerment of patient/family.
HRTW Transitions Questionnaire • Items can be answered: • Yes, I do this. • I don’t do this, but I want to do this. • I need to learn how to do this • Someone else will have to do this-Who?
