Health Care Transition. Disclosure Statement of Financial Interest. Objectives. For Patients with Chronic Health Conditions

Transcription

1 Health Care Transition For Patients with Chronic Health Conditions David Wood, MD, MPH August 1, Disclosure Statement of Financial Interest I, David Wood DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation. Objectives Understand the need for supported transition to adult hood and adult care for youth with chronic health conditions Implications for life trajectory and adult health outcomes Discuss Barriers to Transition to Adult Care Discuss approaches for health care transition Care coordination Self Management support JaxHATS experience with this population 1

2 Changing Epidemiology of Diseases Arising in Childhood About 750,000 youth with special health care needs turn 18 each year; Most will live well into adulthood Cystic fibrosis: median survival is 40 Sickle cell disease: Mid 40s Cerebral Palsy In US ~800,000 people have CP; >400,000 are adults 85% of young adults with CP will reach age 50, 70% will reach age 60; Spina Bifida 80% probability of survival until age 30 Murphy KP, et Al. Dev Med Child Neural 1995;37: Frisch and Msall. Developmental Disabilities Research Reviews 18: (2013) Hemming, et. Al. Developmental Medicine & Child Neurology 2006, 48: Increasing Life Expectancy in Persons with Spina Bifida Cambridge Cohort born in late 1960s Oakeshott, et. Al. Arch Dis Child Kancherla. Birth Defects Research 2014 New York Cohort born in late s What is Health Care Transition? Health Care Transition (HCT) The purposeful, planned movement of adolescents and young adults from child-centered to adultoriented health care systems. Transition Preparation Increased responsibility for health care self-management; understanding and planning for changes in health needs, insurance, and providers in adulthood; should occur across ages Transfer of Care Discrete event, physical transfer from a pediatric to an adult provider; should occur between ages AAP Consensus Statement, 2011 Successful Transition Patients are engaged in and receive on-going patientcentered adult care. 2

3 Why is HCT Important? Without support during transition youth may: Lose of insurance Decreased access Decreased medication adherence Increased ER visits, hospitalizations Deterioration in health; poor out comes HIV-decreased CD4 counts; Diabetes-worsening control; Transplant-rejection; Congenital Heart Disease premature death Institute of Medicine, 2007; Boyle et al. 2001; Callahan et al. 2001; Betz 2003; Freyer et al. 2008; Tuchman et al. 2008), Watson 2000; Annunziato et al. 2007; Gurvitz et al. 2007; Dugueperouxet al. 2008; White 2002; Williams AHRQ Technical Brief #15; 2014 Lifespan health trajectory is shaped by risk and protective factors Halfon, Inkelas and Hochstein,

4 FACTORS IMPACTING HEALTH CARE TRANSITION Factors Impacting HCT Social Trends Youth development Health insurance Availability of adult providers Preparation by pediatricians and pediatric specialists Secular Changes: Emerging Adulthood More youth pursuing higher education 1940 s 14% post HS ed s 60% Mixed paths of education & vocation Including youth with serious health conditions Age of marriage is increasing s it was 20 years of age; 1990 s it rose to years of age Increase in length of transition up to late 20 s, early 30 s. Source: U.S. Census Bureau,

5 Factors Impacting HCT Social Trends Youth development Family Barriers Health insurance Availability of adult providers Preparation by pediatricians and pediatric specialists Cognitive Development: Piaget s Formal Operational Thought EARLY (11-13) Concrete thought No future perspective MIDDLE (14-16) Abstraction Has future perspective; not always used LATE (17-21) Established abstract thought Future oriented 5

6 Adolescent Brain Development Somerville, Jones, & Casey (2010) Adolescents use rational calculation to perceive risks and benefits They do not believe they are invulnerable! May even overestimate key risks (lung cancer from smoking; HIV risk; death) BUT They Lack of future orientation => discount risks AND More intense drive for immediate benefit Impulsive lack of development of executive fxn Highly influenced by peer/social group Fischhoff (2008); Jamieson & Romer (2008); Reyna & Farley (2006) Medical Decision-Making and Disease Self Management Immediate benefits outweigh long term risks Inconvenience of Bowel program vs. complications from constipation Taking daily medications requires commitment to routine Pain of Depo shot vs. risk of pregnancy Staying out with friends vs. selfcatheterization Future orientation & abstract throught needed for competent self management 6

7 Social Trends Factors Impacting HCT Youth development Family Barriers Health Insurance-US Availability of adult providers Preparation by pediatricians and pediatric specialists Family Barriers Readiness to let go Attachment to pediatric providers Recognition of child s ability to care for self and self-advocate Poverty and disadvantaged environment Less services and supports Perhaps more natural supports Family cohesion and communication Stressed from many angles Family Functioning, Parent-Child Conflict Predicts Transfer of Self Care Responsibilities From Parent to Youth Stepansky, et. Al. Medical Adherence in Young Adolescents with Spina Bifida: Longitudinal Associations with Family Functioning. J Pediatric Psychology

8 Factors Impacting HCT Social Trends Youth development Family Barriers Health Insurance-US Availability of adult providers Preparation by pediatricians and pediatric specialists Inadequate Health Insurance Aging out of health care plans/services Medicaid 18 SCHIP/KidCare 19 Title V Safety Net funds--21 Benefits in temporary jobs often limited Change in eligibility rules for SSI Loose Medicaid in non-expansion states Cost barriers for families to keep youth on parental work-related insurance Uninsured Young Adults in the US Collins et. Al., Realizing Health Reform s Potential How the Affordable Care Act Is Helping Young Adults Stay Covered. Commonwealth Fund,

9 Youth with SHCN Often Lack Health Insurance Callahan and Cooper. Pediatrics. 2007:119;1175 Percentage of Uninsured Young Adults Declined from 2011 to 2013; Gains Were Largest Among Low-Income Young Adults Percent of young adults ages Insured now, time uninsured in past year Uninsured now Total <133% FPL 133% 249% FPL 250% 399% FPL 400% FPL or more Note: Totals may not equal sum of bars because of rounding. FPL refers to federal poverty level. Source: The Commonwealth Fund Health Insurance Tracking Surveys of Young Adults, 2011 and Factors Impacting HCT Social Trends Youth development Family Barriers Health Insurance-US Availability of adult providers Preparation by pediatricians and pediatric specialists 9

10 Comfort of Adult Providers by Condition 2008 New Hampshire Why Internists Won t Take YSHCN Lack of training in conditions arising in childhood Lack of Time/reimbursement Lack of support for care coordination Lack of Access to super-specialists adolescent medicine; adult congenital heart; adult spasticity management, etc. Lack of medical summary /communication Okumura et al, JGIM 2008; AAP Periodic Survey 2008; Thompson et al, Pediatrics, 2009; Peter N. Pediatrics. 2009; 123;417 Factors Impacting HCT Social Trends Youth development Family Barriers Health insurance Availability of adult providers Preparation by pediatricians and pediatric specialists 10

11 National Survey of Parents of Children with Special Health Care Needs 17,114 parents of YSHCN aged Only 40% of parents got transition communication 1. Shifting care to an adult provider 2. Future adult health care needs 3. Upcoming eligibility changes in health insurance 4. Encouraging youth to take responsibility for their care Less likely to receive HCT counseling if male, nonwhite, public/no insurance More likely if have a medical home (55% vs. 29%) Ref: McManus et al, Pediatrics, 2013; Lotstein et al, Pediatrics 2009 How are we doing? Parents of youth with Cerebral Palsy report low rates of transition counseling 46% were counseled on self-management; 29% discussed transfer to adult providers Parents of youth with Profound ID report not feeling prepared to move to adult care. Limited preparation; Fragmented care in adult system; Their suggestions to improve transition: early start, information provision, coordination between pediatric and adult care. Only 21.6% of young adult respondents in the 2007 Survey of Adult Transition and Health made a successful transition to adult healthcare. 24% of young adults had received key transition counseling services Blackman and Conaway. Adolescents with Cerebral Palsy. Clinical Pediatrics Bindels-de Heus, et. Al. Intellectual And Developmental Disabilities; 2013, Vol. 51, No. 3, Sawicki, Wood, et. Al. Pediatrics When we left pediatric care it was as if someone flipped the switch and turned the lights off. -- parent of child with developmental disability 11

12 HOW TO IMPROVE HEALTH CARE TRANSITIONS Transition Framework Preparation Process Outcome Changing Medical Care Changing Insurance Access to Continuous, High Quality Medical Care Developing Self-Care Abilities Education/Job Planning Maximized Quality of Life And Role Attainment Ref: Lotstein et al, Pediatrics 2011 Integrated Model of HCT Parent/Family Youth National Coordinating Centre for NHS Service Delivery and Organisation Research and Development (NCCSDO) ( 12

13 Evidence for Transition Planning Most research from outside the US Studies done in CF, Type 1 Diabetes Key findings Contact with adult providers before transfer Involvement of care coordinators in transition preparation and system navigation Bloom et al, Journal of Adolescent Health,

14 New Models of Health Care Transition Clinics Sub-specialty based: Cystic Fibrosis, Diabetes, Sickle Cell Dz., Intellectual Disabilities (Down Syndrome), Nephrology (STARx Program at UNC), Peds Cancer Survivor/Late Effects Clinics Primary care based: JaxHATS Program at University of Florida UCLA Med-Peds Transition Care Program Texas Childrens/Baylor Transition Program TWO KEY ELEMENTS: 1. Self management support 2. Care coordination 14

15 SELF MANAGEMENT SUPPORT Encourage Patient Self Management and Adherence Make patients including those who have cognitive disabilities central members of their health-care team Have them participate in care decisions Help them build self-advocacy skills, Speak directly to them about their care Caregivers to step into a supportive, rather than directive, role. Arrange for formal neurocognitive and functional testing of patients who have cognitive impairment Refer to disability-related advocacy and support groups for youth and young adults Wagner. Gillette Children s Hospital. Pediatric Perspectives Transition Readiness (TR) Assessment and Training Assess readiness to transition Self management skills Making appointments and talking with providers Understanding of insurance Other life goals Specific Transition Readiness Visits Assess transition readiness Education, negotiate transition goals Homework assignments make medication list/calendar; bring list of questions for the doctor or nurse next visit be in room alone with doctor 15

16 TRAQ: Transition Readiness Assessment Questionnaire Validation of Transition Readiness Assessment Questionnaire (TRAQ) High reliability overall; Cronbach s alpha 0.94) Good reliability for 4 of the 5 subscales (Cronbach s alpha =.90 to.77) All 5 subscales increase with age (p < 0.005) Gender differences found (females > males adjusted for age) Scores go up with HCT intervention Makie 58 adolescents (16-18) RCT to: a) usual care; vs. b) 1 hour of nursing education on HCT TRAQ self-management scores increased by 0.8 unit vs. 0.2 for controls(p < 0.05) Sawicki, Wood, et. Al, 2007; Wood, et. Al, Academic Pediatrics 2014 Mackie AS, et al. Heart 2014;100: doi: /heartjnl Intervention Trials in HCT MD2Me 81 Adolescents with IBD, CF and T1D MD2Me recipients received a 2-month intensive Web-based and text-delivered disease management and skill-based intervention MD2Me recipients also had access to a texting algorithm for disease assessment and health care team contact. Huang, et. Al. PEDIATRICS Volume 133, Number 6, June

17 Huang, et. Al. PEDIATRICS Volume 133, Number 6, June 2014 Motivational Interviewing Sarah J. Erickson, PhD; Melissa Gerstle, BA; Sarah W. Feldstein, MS Arch Pediatr Adolesc Med. 2005;159(12): CARE COORDINATION 17

18 Care coordination is a process that facilitates linkage of children and their families with appropriate services and resources in a coordinated effort to achieve good health. Benefits of Care Coordination Allows for clinical and process improvements Reduces health care costs Reduced hospital/er visits Improves family satisfaction Helps families who are struggling to access needed services and need professional assistance to do so Links between health care and educational/vocational systems are important for youth with special health care needs AAP Policy Statement on Care Coordination Key Elements of a Patient- Oriented HCT Care Plan Information to make the patient an informed consumer Know their medication, devices, equipment, supplies... Basic history, physicians, providers, insurance Know how to take care of themselves on a day-to-day basis Know what to be concerned about Know what to do in an emergency 18

19 Archive the Transition Information Form on a secure MY PLACE site at HealthyTransitionsNY.org Key Elements of a Provider- Oriented Transition Care Plan Provides good hand-off to adult providers primary care and specialists Key history summarized Multi-disciplinary input Recommends future supports and treatment Anticipates future complications Recommends monitoring approach and frequency 19

20 Florida s clearinghouse for health care transition information National Center for Health Care Transition Improvement Collaborative Educational Materials 20

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