Building a Better Bridge Transitioning Adolescents Young Adults with

Building a Better Bridge: Transitioning Adolescents/Young Adults with Special Health Care Needs to an Adult Medical Home. Oscar Taube, MD Coordinator, Adolescent Medicine Lead Physician, Pediatric OPD (Greenspring Pediatric Associates, A Division of Park West Health Systems, Inc. ) Samuelson Children’s Hospital at Sinai November 12, 2013

There’s a different view from each side of the fence…

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

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. ).

Fast forward to age 25…

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 24) 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 ?

Emerging Young Adults (18 -25) • “Emerging young adults often have the lowest perception of risk and the least access to care. Overall, emerging young adults have the highest rates of motor vehicle injury and death, homicide, mental health problems, STI’s, and substance abuse. They have the lowest rates of health insurance coverage. In short, emerging young adults are adrift in a perfect storm of health risks. ” • -Neinstein 2013 “The New Adolescents: An analysis of the health conditions, behaviors, risks and access to service among emerging adults. ”

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 20 th birthday. • 2. Example: 1970’s, 33% 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

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 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. ”

Internal Medicine wins the toss; Pediatrics will kick…

…and Internal Medicine will receive

Barriers to Successful Health Care Transition

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”.

Culture of Care: Pediatric Provider ﭭ Family-centered ﭭ Developmentally oriented (School and life progress) ﭭ Nurturing, high level psychosocial support ﭭ Interdisciplinary ﭭ Involve parent direction and consent ﭭ Flexible ﭭ The best way to care for patients, right? . . . Maybe.

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.

Culture of Care: Adult Provider Individual-based care (not family-based) Disease focused (not developmentallybased) 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 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.

So how can we make health care transition work?

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 the Developmental Tasks of Adolescents and Young Adults • • Separate from family Develop healthy self-image Set/achieve educational goals Achieve financial independence Live independently Marriage-partnership Participate in community life Be happy-Intact Mental health.

• • • 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) 1. Improved residency/post residency training in care of “grown up” pediatric diseases 2. Improved training in adolescent/young adult psychosocial development 3. 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! 4. Identify a transition staff member in office; better billing approaches to the care of these patients. 5. Adopt the Woodward “LEAVE” model (or better termed, “Accept” model) in caring for patients.

What can pediatricians do? • 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. Use the Woodward “LEAVE” approach. • 4. Recognize that this takes a team approach. • 5. The roles of all involved will change as the process unfolds- especially the role of the YSHCN! • 6. Use questionnaires to measure your progress. • 7. Self-determination skills should be encouraged and taught throughout the process. • 8. Consider what model of transition you’ll adopt. • -White, P. AAP Textbook of Adolescent Medicine, 2010.

Transition: Woodward, MD “LEAVE” Approach • 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?

HRTW Health and wellness 101 Questionnaire-a sample • 1. I understand my health care needs and disability, and can explain my needs to others. • 2. I can explain to others how my family’s customs and beliefs might affect health care decisions and medical treatments • 3. I carry my health insurance card every day • 4. I know my health and wellness baseline (BP, etc. ) • 5. I call for my own doctor’s app’ts and Rx. Refills • 6. I know my symptoms that need quick medical attention. • 7. I pay my co-pays for medical visits. • -www. hrtw. org

Health Care Transition Index-A Tool to see what your office needs to do! • Topic 1: Office Health Care Transition Policy • Level 1 Basic • Level 2 Responsive • Level 3 Proactive • Level 4 Comprehensive. • -From: www. gottransition. org; Center for Health Care Transition Improvement

Models for Transitional Care • 1. No model-young adult told she/he can no longer access pediatric care.

Models for Transitional Care • 1. Lack of a model-Young adult told she/he can no longer access pediatric care • 2. Referral Model-established relationship between providers; patients “referred” at mutually agreed upon time. • 3. Extended care model: Pediatric providers agree to provide some level of care to patients (usually subspeciality care) • 4. Transitional program model: Predetermined process with providers agreeing to sequentially move care of patient from one program to another.

Transitional Program Approach • 1. Help patient select site for care • 2. Meet with medical/social support staff at transitional care site • 3. Address Vocational issues • 4. Insure adequate care for children/other family members • 5. Ensure cooperation of “support persons. ” • 6. Arrange/accompany for first visit to new provider.

• • Questions? Request for my power point? 410. 601. 5324 otaube@lifebridgehealth. org

Help! Health Care Resources Affordable Care Act: http: //www. marylandhealthconnection. gov Office of Genetics and Children with Special Health Care Needs, DHMH. Children’s Resource Line: 1 -800 638 -8864. *Baltimore Healthcare Access, Balt. City Health Dep’t. www. bhca. org *Maryland Chapter, American Academy of Pediatrics. www. mdaap. org. *Condition specific Organizations.

Help! Disability Resources • Developmental Disabilities Administration: dda. dhmh. maryland. gov • Division of Rehabilitation Services: www. dors. state. md. us • Kennedy Krieger Institute: www. resourcenetworkatkki. org • Organizations: The ARC, United Cerebral Palsey; Asthma and Allergy Network; Abilities Network (Epilepsy Foundation of the Chesapeake Region); CF Foundation, etc.

Resources/References • 1. Adolescent Health Transition Project-U. of Washington http: //www. depts. washington. edu/healthtr • 2. Blum, R. Ed. “Improving Transition for Adolescents With Special Health Care Needs from Pediatric to Adult-Centered Care. ” Pediatrics Vol. 110 No. 6 12/02 (supplement) • 3. Callahn ST, Cooper WO. “Uninsurance and Health Care Access Among Young Adults in the United States. ” Pediatrics 2005; 116: 88 -95 • 4. Kaiser Commission on Medicaid and the Uninsured. “Aging Out of EPSDT: Issues for Young Adults with Disabilities. ” Jan. ’ 07. www. kff. org • 5. Reiss JG, Gibson RW, Walker LR. “Health Care Transition: Youth, Family, and Provider Perspectives. ” Pediatrics 2005; 112 -120. 6. Shaw TM, De. Leat, DE. “Transition fo Adolescents to Young Adulthood for Vulnerable Populations. ” Pediatrics in Review Vol. 31 No. 12 December, 2010.

Resources/References, cont. • 8. Simon, TD et. al. “Who Will Care for Me Next? Transitioning to Adulthood with Hydrocephalus. ” Pediatrics, 2009 124. No. 5 1431 -1437. • 9. American Academy of Pediatrics: “Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. ” Pediatrics 2011. 128; 182. • 10. Bloom SR et. al. “Health Care Transition for Youth with Special Health Care Needs. ” Journal of Adolescent Health. Vol. 51 No. 3 Sept. 2012 • 11. Healthy and Ready to Work Consortium. Accessed at www. hrtw. org • 12. White P “Transitions of Adolescents with Special Health Care Needs to Adulthood. ” In Fisher M et. al AAP Textbook of Adolescent Health Care. 2011

References, resources, cont. • • • 13. Tuchman LK, Schwartz LA, Sawicki GS, Britto MT: “Cystic Fibrosis and the Transition to Adult Medical Care. ” Pediatrics 2010; 125: 566 -573. 14. AAP Council on Foster Care, Adoption and Kinship Care/Committee on Early Childhood: “Policy Statement: Health Care of Youth Aging Out of Foster Care. ” Pediatrics 2012; 130; 1170 -1173. 15. AAP Committee on Pediatric AIDS: Policy Statement: Transitioning HIV-Infected Youth Into Adult Care. ” Pediatrics 2013; 132; 1 192 -7. 16. Healthy and Ready to Work Coalition. Accessed at: www. hrtw. org 17. American College of Physicians “Position Paper: The Health Care Needs of the Adolescent. ” Annals of Internal Medicine 6/1/89 Vol. 110 #11; 930. 18. Power point presentations on transition by: Eric Levey, MD, KKI; Lawrence D’Angelo, MD CNMC. 19. Neinstein LS “The new adolescents: An analysis of health conditions, behaviors, risks and access to services among emerging young adults. Accessed 10/29/13 at: http: //www. usc. edu/studentaffairs/Health_Center/thenewadolescents/doc/The. New. Adolescents_Final_Locked. pdf 20. www. gottransition. org Center for Health Care Transition Improvement.