Adolescent to Adult

June 2005 Adolescent to Adult Health and Other Transition Issues for Children and Youth with Special Health Care Needs

Adolescent Health Transition Project (AHTP) Sponsored by Washington State CSHCN Program E-mail: healthtr@u.washington.edu Address: Box 357920 University of Washington Seattle, WA 98195-7920

What you will learn today • Who are adolescents (youth) with special health care needs (YSHCN)? • What is health care -and other-transition? • What are the barriers to transition? • How can we support transition? • What do YSHCN and their families want? • What are some “transition tools”? (Adolescent Transition Resource Notebook?)

Youth with Special Health Care Needs(YSHCN) • > 15% of adolescents 12-17 have a special health care need. • Boys are twice as likely as girls to receive special education services. • ~ 8% of adolescents 10 to 17 have some type of activity limitation. What’s Up? Special Needs and Disabilities: Information for Adults Who Care for Teens, 2003

YSHCN: Washington State • ~ 22% of 8th and 12th graders and nearly 25% of 10th graders report: they have a physical, emotional or learning disability or long-term health problem 2002 Washington State Healthy Youth Survey

Youth with Special Health Care Needs(YSHCN) • 90% of YSHCN reach their 21st birthday • 45% of YSHCN lack access to a physician familiar with their health condition • 30% of all youth 18-24 years of age lack a payment source for health care • 40% YSHCN demonstrate ER use annually (vs 25% of ‘typical’ youth) • YSCHN experience increased school interruptions

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.

500,000 Children with Special Health Care Needs turn 18 every year • Newacheck & Taylor (1994)

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

Transition Areas • Health Care • Health promotion and preventive care • Specialized care • Prevention of secondary disability • School to Work • Education • Vocational readiness • Career choice • Dependency to Independence • Housing • Adaptive living skills • Dressing/grooming • Food purchasing and preparation • Budgeting

National CSHCN Goal #6 All YSHCN will receive the services necessary to make appropriate transitions to all aspects of adult life, including adult health care, work and independence.

Health Care Transition (HCT) “The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care system.” Transition from child-centered to adult health-care systems for adolescent with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993; 14:570-576

Health Care Transition (HCT) Consensus Statement Goal of HCT: Maximize lifelong functioning and potential through the provision of high quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. AAP, AAFP, ACP-ASIM Consensus statement on health care transition for young adults with special health care needs. Pediatrics 2002;110:1304-6

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

Culture of Care: Adult Provider • Individual-based care (not family) • Disease focused (not developmentally) • Cognitive approach (rather than nurturing) • 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’

Culture Shock! • Anxiety produced when a person moves to a completely new environment. • Not knowing what to do or how to do things • Not knowing what is appropriate or inappropriate • Feeling old behaviors are not accepted as or considered as normal in the new situation • Feeling of a lack of direction

Barriers to Successful Health Care Transition – (Pediatricians) • Difficulty identifying adult primary care providers • Adolescent resistance • Family resistance • Lack of institutional support • Time for planning • Resources • Personnel Survey of Pediatric Primary CareProviders Peter Scal, MD Pediatrics 2002; 110:1315-1321

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)

Barriers to Successful HCT: Challenges for Adult Providers • Provider perception that some preventive services may be unnecessary (e.g. ‘not sexually active’) • Complete exams are time consuming for this population (special equipment? sedation?) • What to do with abnormal results – will the patient tolerate more invasive testing • Who advocates for the patient, esp. if parent/guardian not available Transitioning Issues for Patients with MR/DD, Shari Robins MD May 2004 Presentation.

Barriers to Successful HCT: Challenges for Adult Providers • Requires adult providers to acquire new knowledge and skills to care for medically complex young adults with “childhood onset” conditions • Patients and families may be challenging both clinically & interpersonally • Need to appreciate social & psychological aspects of illness • Expectations of patient self-management skills

Barriers to Successful Health Care Transition (WA State) • Lack of medical summary* • Medical jargon*** • As a child, not being involved in decisions related to his or her own health care** • Burned out on health care in pediatric • setting** • Not planning for transition** *teens, **young adults, ***teens and young adults Adolescent Health Transitions: Focus Group Study ofTeens and YoungAdult with Special Health Care Needs. Fam CommunityHealth 1999;22(2) 43-58

Barriers to Successful Health Care Transition (WA State) • Pediatric caregivers more caring than adult caregivers* • Difficult finding an adult provider** • Not beginning early*** • Developmentally, teens are focused on here and now* • Parents not wanting to let go* • continued…

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. • Graduation certificates; Transition awards

Why move to adult health care?

Psychosocial Benefitsfor Youth • Promotes normal social & emotional development • Promotes positive self-concept and sense of competence • Supports positive self-image and self-reliance • Promotes independent living • Supports long term planning and life goals • Broadens system of interpersonal and social supports

Health Benefits for Youth • Receipt of adult-oriented primary and preventive care – • Screening for and treatment of adult health problems • Sexuality, fertility, and reproductive health

PAP smears Mammograms Colon cancer screening Menopause Pulmonary embolism Hypertension Type II Diabetes Osteoporosis Stress incontinence Glaucoma Mitral regurgitation Menorrhagia Smoking cessation Anorexia Thyroid disorders Deafness Obesity Anemia Sleep disturbance Decubitus ulcers GERD Medical Issues in Adults Survey of Clients in Adult Training Centers (MR Diagnosis) – Case Western Reserve; Shari Robins MD

Health Benefits for Youth • Adult-oriented specialty care – • Direct experience with exacerbations of the chronic condition in adults • Access to adult inpatient services and subspecialists

Benefits to Pediatricians & Pediatric Facilities • Practice within area of training and interest • Consistent with organization’s mission & focus • Make room for new patients

Benefits to Internists & Adult Facilities • Practice in a new area • Responsive to a significant need • Consistent with facility mission & focus • Expanded patient base • Clinical research opportunities

Supporting Health Care Transition . . .

Goals of Individual Health Transition • Identified health care provider • Written health care transition plan by age 14 years • A continuously current medical summary • Health care provider who uses comprehensive guidelines for primary care • Affordable and continuous health insurance coverage • 2002 Consensus Statement – AAP/AAFP/ACP (Am Coll Physicians); Pediatrics

Transition Begins in Childhood • Career planning begins in utero • Focus on health promotion and normal growth and development • Prevent secondary disabilities • Promote self-care and independence • Promote socialization and peer activities • Encourage early volunteer and later work experiences • Refer to developmentally supportive services, early intervention, special education or section 504 • AAP Every Child Deserves a Medical Home

Prepare for ‘Letting Go’ • Transition is more than a process. It takes all of us to make the journey as smooth as possible …

Prepare for ‘Letting Go’ • Health Care Provider: • Facilitating the process by setting the example at different developmental stages • Family: • Changing care decision-making role to promote independence and self-determination as developmentally appropriate • Child/Youth: • Assuming roles and responsibilities for preparing for a healthy/productive adulthood. • AAP Every Child Deserves A Medical Home

Prepare for ‘Letting Go’ • Think and talk with youth and family in five-year-into-the-future segments • Teach/reteach about the health condition at appropriate cognitive level • Involve youth (and family) in decision-making (‘assent to consent’) • Ask about and support ‘grown-up’ plans • Ask youth how to help make their dreams a reality Adapted from AAP: Every Child Deserves a Medical Home

Address What Youth Need to Know for Successful Transition • Be able to describe signs and symptoms requiring urgent medical attention • Understand the implications of condition and treatments on sexuality and reproductive health • Address access to insurance Peter Scal, Pediatrics 110(6): 2002

Need to Know (cont.) • Know about condition-specific support and information organizations • Be able to describe the roles of primary care providers and subspecialists • Identify emergency health services • Understand health promoting behaviors • Monitor treatments and health parameters Scal, Pediatrics 2002

Provide Support During Adolescence by Addressing: • Wellness, fitness, leisure activities • Minor first aid • Risk taking • Mental health • Preventing secondary disabilities • Sexuality • Preventing abuse • Community participation – recreation, religious participation

Specific steps for the Pediatrician during the teen years • Encourage youth to cosign and become involved in the health care process; If guardianship or ‘medical power of attorney’ is an issue, complete before the young adult’s 18th birthday • Define physician role and expectations around transition in early teen years • Provide a transition plan of care • Focus on health promotion, prevention of secondary disabilities and prevention of self-destruction

Specific steps for the Pediatrician during the teen years • Start to address insurance coverage in adulthood • Look for sources of adult health care and provide strategies for selecting an adult health care provider • Encourage family to visit and ‘interview’ physician and staff • Transition primary care before specialty care • Provide health record to new provider and give youth a copy (a 1-2 page transition summary) • Update portable medical summary and care plans

Steps for the Pediatric Provider during the youth’s teen years • Be aware of other systems/resources for youth and adults with disabilities i.e. “ A Few Good Numbers” • Schools • Division of Vocational Rehabilitation (DVR) • Division of Developmental Disabilities (DDD) • SSI for adults/Ticket-to-Work • ARC • Centers for Independent Living • Technology Help

Transition Care Plan • Create with youth and family at age 14 (or earlier) and update annually • Follow all routine guidelines for routine and preventive care • Outline major concerns • Include data relevant to the concerns • Outline a plan of action • Indicate the person responsible for each step of the plan • Indicate time frame for the steps

Transition Tools for Youth and Families • AHTP Materials • Interactive Health History Summary Form • Adolescent Transition Resource Notebook • Transition Timelines • Adolescent Autonomy Checklist –AHTP(Skills at home, personal skills, health care skills community skills, leisure time skills, skills for the future as education, voc/tech,housing) • Don’t Forget About Health Transition info folder • Brochures…

Transition Tools for Youth and Family • Transition Worksheet – • Division of Specialized Care for Children, University of Illinois (UI) at Chicago Youth: http://internet.dscc.uic.edu/forms/psu/0596A.pdf Parent: http://internet.dscc.uic.edu/forms/psu/0596B.pdf

Transition Tools for Youth and Family • Transition Information Sheet for Families UI at Chicago http://internet.dscc.uic.edu/forms/psu/0592.pdf • ‘Speak Up for Health’ materials http://www.pacer.org/publications/transition.htm • ‘How Well Do You Know Yourself’ AZ Racing to the Future Teaching Exam http://www.hrtw.org/tools/check_assessment

Transition Tools for Youth and Families • ‘Get Ready to Manage Your Health Care’ http://www.fpg.unc.edu/~ncodh/Data/Articles/ManageHealthCare.html • Autonomy Checklist http://www.spannj.org/Family2Family/adolescent_autonomy_checklist.htm • Health Care Skills Autonomy Checklist http://www.minnesotaschoolnurses.org/Health_Care_Skills.pdf

Transition Tools for Youth and Families • Adolescent Health Transition Website http://www.depts.washington.edu/healthtr • Internet Resource for Special Children http://www.irsc.org • Healthy and Ready to Work http://www.hrtw.org (great list of tools/checklists) • Disability http://www.disabilityinfo.org

Transition Tools for Youth and Families • Family Voices – http://www.familyvoices.org • Assistive Technology – http://www.abledata.org • Life Maps - 0-12 months; 13-35 months; 6-10 yrs; 11-13 yrs; 14-16 yrs; 17-21; short form –http://www.chs.ky.gov/commissionkids/transition.htm

Adolescent to Adult