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Transition Processes of Medical Homes HRTW Questionnaire Early Findings

Transition Processes of Medical Homes HRTW Questionnaire Early Findings. Kathleen B. Blomquist, RN, PhD Patience H. White, MD, MA, FAAP HRTW National Resource Center MCHB Meeting - Medical Home Grantees Washington, DC, November 29, 2006. HRTW Team www.hrtw.org.

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Transition Processes of Medical Homes HRTW Questionnaire Early Findings

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  1. Transition Processes of Medical HomesHRTW Questionnaire EarlyFindings Kathleen B. Blomquist, RN, PhD Patience H. White, MD, MA, FAAP HRTW National Resource Center MCHB Meeting - Medical Home Grantees Washington, DC, November 29, 2006

  2. HRTW Team www.hrtw.org Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Medical Home Richard Antonelli, MD, MS, FAAP & Transition Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Federal Policy Patti Hackett, MEd Tom Gloss Family, Youth & CC Ceci Shapland, MSN Trish Thomas Interagency Debbie Gilmer, MEd HRTW University Jon Nelson, MS

  3. The Ultimate Outcome: Transition to Adulthood Health Care Transition Requires Time & Skills for children, youth, families and their Doctors too!

  4. Consensus Statement: Health Care Transition American Academy of Pediatrics American Academy of Family Physicians American College of Physicians-American Society of Internal Medicine CONSENSUS STATEMENT calls on physicians to: • Understand the rationale for transition from child-oriented health care • Have the knowledge and skills to facilitate that process • Know if, how, and when transfer of care is indicated Pediatrics 2002:110 (suppl) 1304-1306

  5. Consensus Statement: Health Care Transition Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 1. Identify primary care provider 2. Identify core knowledge and skills 3. Maintain an up-to-date medical summary that is portable and accessible Pediatrics 2002:110 (suppl) 1304-1306

  6. Consensus Statement: Health Care Transition Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 4. Create a written health care transition plan by age 14: what services, who provides, how financed 5. Apply preventive screening guidelines 6. Ensure affordable, continuous health insurance coverage Pediatrics 2002:110 (suppl) 1304-1306

  7. HRTW Surveys: Status of Transition, 2006 STATES Title V CYSHCN = 40 Medical Homes = 30+ practices/17states HOSPITALS NATIONWIDE Shriners Hospitals = 20 NACHRI Hospitals = 18

  8. HRTW Surveys: Status of Transition 2006 Distribution AAP’s Center for Medical Home Initiatives mailing lists: - Medical Home Learning Collaboratives - CATCH grantees for past 5 years - Medical Home Projects - MCHB Integrated Services Grants - AAP Listservs - LEAHs

  9. HRTW Questionnaire for Medical Homes • Sections: • Policies and Practices • Relationships with Community Resources • Perception of Barriers to Transition • Resources Used • How HRTW and AAP can help • Items based on all 6 Critical First Steps in Census Statement

  10. HRTW Surveys: Results - Summer/Fall 2006 About Those Who Responded • 28 practices / 17 states • Most involved with Medical Home projects • 25 pediatricians, 2 Med-Peds, 1 Family Knowledge of Consensus Statement • 57% were familiar • 11% unsure • 32% not

  11. 1. Primary Care 50%Have Policy to Transition Youth - 38% PA: White, Hackett, Turchi & Gatto (N=21) - 13% RI: Burke, Spoerri, Price, Cardosi, Flanagan (N=103) 61%Have practice to whom they refer - 66% PA: White, et al RI: difficulty finding adult provider - 70% no for adolescents - 51% no for YSHCN

  12. 1. Primary Care(con’t) 54%recruitproviders adult primary /specialty (32% want help) 68%support adult providers assuming care for YSCHN (21% want help) - xx%PA: White, et al contacted adult provider

  13. 1. Primary Care(con’t) 93%provide care coordination to youth with complex conditions (7% want help) 54% have dedicated staff member who coordinates transition - 33% PA: White, et al

  14. 2. Core Knowledge & Skills 36%have forms to support transition (82% want help) 35%provide educational materials regarding transition (50% want help)

  15. 2. Core Knowledge & Skills(con’t) 61%help youth/families plan for emergencies (29% want help) 67%assist with accommodations school/studying or work (21% want help)

  16. 2. Core Knowledge & Skills(con’t) 64%promote independence in health condition management (25% want help) 57%refer to skill-building experiences (32% want help)

  17. 2. Core Knowledge & Skills(con’t) 86%refer to community resources/ public benefits(11% want help) Formal referral mechanisms in place: 39% mental health/counseling 25% adult subspecialty 21% adult PCPs 21% dental < 15% make formal referral to adult services VR, SSI work incentives, school or college services, recreation, transportation, attendant care, Centers for Independent Living, supported living, housing (about 20% provide information)

  18. 2. Core Knowledge & Skills(con’t) 18%have written policy to discuss legal issues by age 18 - 71% ask for verbal assent - 25% ask for written assent 19% PA: White, et al 77%discuss sexuality PA: White, et al

  19. Sources of Transition Information 57% staff transition coordinator 54% self directed 46% family to family support 25% state Title V CSHCN agency 21% used HRTW website (21% unsure) 68% used Medical Home website (4% unsure) 18% don’t know where to turn

  20. Balancing Life & Health

  21. 3. Portable Medical Summary 40% Make transportable medical record for some patients (43% want help) 29%PA: White, et al

  22. 3. Medical Summary to Providers RI: Burke, et al • 31% send written summary to adult providers for adolescents • 51% send written summary to adult providers for YSHCN • 18% communicate directly with adult provider to assure transition successful

  23. 4. Written Health Transition Plan 38%Create individualized health transition plan for at least some patients (39% want help) 4% PA: White, et al 61% Helped write IEP goals: 28% none 29% 1-5 x in past year 32% 6 or more times in past year

  24. 5. Preventive Screening 86% Preventive screening – CYSHCN 32% AAP forms 21% GAPS 18% Bright Futures 18% Guidelines to Clinical Preventive Services 7% State health department forms Others – created or adapted forms 45% - PA: White, et al

  25. 65%Screen to identify YSHCN who need transition services (29% want help) Assess for transition readiness PA: White, et al: 23%of youth 23%of family 5. Preventive Screening(con’t)

  26. Screen for All Health Needs • Hygiene • Nutrition(Stamina) • Exercise • Sexuality Issues • Mental Health • Routine(Immunizations, Blood-work, Vision, etc.) • Secondary Conditions/Disabilities • Accelerated Aging issues

  27. 6. Ensure Continuous Health Insurance 43%assist with planning for continuous health insurance during transition (32% want help) PA Survey: White, et al 36% discuss insurance planning 18% discuss estate planning 45% discuss long term plans 71%assist with SSI medical documentation/re-determination (25% want help)

  28. 93%want information on coding for reimbursement for transition services 71%PA : White, et al 6. Ensure Continuous Health Insurance

  29. Self-Rating of Transition Processes 4%Not interested 25%No processes, but interested 32%Beginning stages 18%Working on; about halfway to where want to be 11%Have transition policy and processes integrated into practice 62% interested in developing transition processes PA: White, et al (need more exact – and can report in same way with HRTW)

  30. Transition Expansion 43%say practice has expanded transition services in past 2 years Staff: nurse transition coordinator, on-site case manager, social worker, Med-Peds Formalized assessments/interventions - Beginning earlier - Developing referral lists for adult providers - Developing referral lists for other services including camps, support groups

  31. 46%have youth/family involvement in development of transition services(PAC, YAC, support groups, focus groups, anecdotes) 14%have tracked outcomes (satisfaction with system) Youth/Family Involvement

  32. Barriers to TransitionExtremely Important/Important 90% Fragmentation of care among systems 83% Lack of services for YSHCN who require supported living 82% Lack of knowledge or linkages to community resources 82% Lack of staff time

  33. Barriers to TransitionExtremely Important/Important 72%Lack of capacity of adult providers for care of YSHCN 64%Inability to access adult specialty care 61% Limited coverage for services by public/private insurance

  34. Conclusions • PREPARE YOUTH - Physicians involved with medical home projects are only partially preparing YSHCN for transition to adult providers and expectations • TECHNICAL ASSISTANCE - Physicians are asking for help to implement the Consensus Statement’s Critical Steps • BARRIERS - The health, insurance, education, and social service systems present many barriers to transition of YSHCN to adulthood.

  35. Assistance Requested from HRTW and AAP • EDUCATION: for training pediatric, family, internal medicine residents/practitioners to increase capacity • TOOLS: Assessment, transition plans, brief interventions, systems and structures for building transition into services • REIMBURSEMENT: Organized system of payment and responsibility for the population • RESOURCES: Conferences, websites, sources for local resources

  36. The Road to Quality Care for Youth, and their Families:Transition from Pediatric to adult based care in the US Patience H. White, MD, MA, FAAP Washington DC

  37. Guiding Observations: New Directions Sign Posts:A New community of youth with SHCN has new expectations for their future. New Destinations:New health challenges call for a new relationship with their partners in the Health care system Road Construction:New routes need to be developed for this new relationship among youth with SHCN, health care providers, and the health care system

  38. Societal Context for youth w/o Dxin Transition • Parents are more involved-dependency “Helicopter Parents” • Twixters = 18-19 - live with their parents / not independent - cultural shift in Western households, which typically whenever a member of the nuclear family becomes an adult, they are expected to become independent. • How they describe themselves (ages 18-29) 61% an adult 29% entering adulthood 10% not there yet (Time Poll, 2004)

  39. “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374 Health & Wellness for YSHCN: Being Informed

  40. Research Context on Readiness for Youth in Transition • YSHCN have delayed developmental milestones in psycho sexual and social development compared to Dutch youth w/o disabilities • Youth with cancer and ESRD scored much less than youth with esoph atresia, Hirschprung’s disease, anorectal malformations • All Reported less risk behavior Stam J Adol Health 2006

  41. Pilot Study: 35 Adult NephrologistsSelf report survey on transitioned patients at the 20th Annual Glomerular Disease Collaborative Network Conference 2005 • Transitioned youth: - 2% of patients in 95% of the practices - come with no introduction 25% of the time - often healthier and survive longer than adult- onset patients • Compared to adult patients: • seem more passive and less knowledgeable about their disease and meds • Have developmental and cognitive challenges • Seem less adherent with appts and meds Ferris at al 2005

  42. Are 17 year olds Ready for Disease self management? 2005 British Study - 77 17 yo youth with JIA: • 20% NOT self medicating • 55.8% see Rheumatologist with parents, 26% see GP independently • Significant association with independent visits (p=0.002) • Majority in mainstream school (76%) • Adolescent Rheumatology Transition Knowledge Questionnaire ART – KQ Sub-optimal! Median score = 9 (1 to 15) Shaw KL, Southwood TR, McDonagh JE 2005

  43. AERC Outcome Research 200 youth (ages 12-20)with SHCN & parents completed the following instruments: • CMI • work experience • Demographics • parents perception of work readiness Results: • Most youth with SHCN feel future certain - attitude similar to age mates without disabilities - delayed in all other - CMI categories, esp. knowledge of workplace • Parents think first job experience should be at age 16 or older • Parental SES not correlated with CMI White, 1999

  44. Adolescent Employment Readiness Center (AERC) Research: Youth are less interested in any transition organized around medical issues and more interested in a transition to financial and social independence.

  45. AERC Context: Data on Adolescent Work in the USA • Teens take health risks less if work < 20 hrs/week (JAMA, 1998) • Part-time work data: - essential to future work success(Skurikor 1993) - most jobs low skill, low pay(US Dept. of Labor) - focus on hours worked, not skills attained (Mortimer 1994) - lack of connection to vocational development (Skorikov 1997) • Minority, poor and disabled youth have less work experience but when work, same hours and wages attained

  46. RESULTS: Summary of Initial Trends After 1 Yr in the AERC, active* 13 yr olds: - more engaged 3x as many 13 yo wanted to join AERC program than other ages • had less differences in measurements compared to age mates w/o disabilities; gap between norms and participants increased with age of participants • made significant improvement compared to other ages in the intermediate outcome measures: ACLSA Life Skills, CMI, and Pediatric QoL

  47. RESULTS: Summary of Initial Trends • After 3 years in AERC, active* participants have: • more education • more paid work experience • more likely to leave SSI ( 3 are off SSI, 3 on their way) • Improved health from youth’s point of view • more likely to have an adult primary care physician * Receiving AERC services ROI of program: 1 youth leaving the SSI rolls pays for 1 Year of the entire program!

  48. Youth Context in Transition What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful?

  49. FACTORS ASSOCIATED WITH RESILIENCEwhich is MOST important? • Self-perception as not handicapped • Involvement with household chores • Having a network of friends • Having non-disabled and disabled friends • Family and peer support • Parental support w/o over protectiveness Weiner, 1992

  50. FACTORS ASSOCIATED WITH RESILIENCEwhich is MOST important? • Self-perception as not handicapped • Involvement with household chores • Having a network of friends • Having non-disabled and disabled friends • Family and peer support • Parental support w/o over protectiveness Weiner, 1992

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