Methods to Assess Transition Readiness & other Novel Tools and Resources

1. Methods to Assess Transition Readiness & other Novel Tools and Resources Sen Ravindran, PGY4 Jill Sullivan, PGY4 Advances in CKD 2011

2. Disclosures • We have no commercial relationships to disclose. Partners in Youth and Disabilities

3. Objectives • Compare and contrast validated transition readiness tools (patient and parent) • Discuss Novel Health Care Provider and Parental resources and support tools • What’s happening in subspecialty transition? Partners in Youth and Disabilities

4. Validated transitional readiness tools • TRAQ (Transitional Readiness Assessment Questionaire 5.0) – JAX HATS (Jacksonville Health and Transition Services)

5. Validated transitional readiness tools • TRAQ (Transitional Readiness Assessment Questionaire 5.0) – JAX HATS (Jacksonville Health and Transition Services) • STARxand TRxANSITION – UNC-CH (Kidney Disease)

6. Validated transitional readiness tools • TRAQ (Transitional Readiness Assessment Questionaire 5.0) – JAX HATS (Jacksonville Health and Transition Services) • STARxand TRxANSITION – UNC-CH (Kidney Disease) • US Department of Health Resources and Service Administration / Maternal and Child Health Bureau (MCHB) created GotTransition.orgToolkit packages- Six Core Elements.

7. Validated transitional readiness tools • TRAQ (Transitional Readiness Assessment Questionaire 5.0) – JAX HATS (Jacksonville Health and Transition Services) • STARxand TRxANSITION – UNC-CH (Kidney Disease) • US Department of Health Resources and Service Administration / Maternal and Child Health Bureau (MCHB) created GotTransition.orgToolkit packages- Six Core Elements. • Transitional Skills Checklist (Univ of Wisconsin) – Long, comprehensive checklist (not discussed) • Who/What/Where (N. Shah) Stepwise transition with Quizzes  Graduation (Sickle Cell)

8. JaxHATS

9. JaxHATS TRAQ VIDEOS

10. TRAQ - JaxHATS “The Jacksonville Health and Transition Services (JaxHATS) clinic was created to help make this transition easier. JaxHATS serves teens and young adults, ages 16-26, with chronic medical or developmental problems” They endorse the TRAQ (Transitional Readiness Assessment Questionnaire), a 20 item questionnaire with 5 subcategories: • Managing Medications • Appointment Keeping • Tracking Health Issues • Talking with Providers • Managing Daily Activities Gregory S. Sawicki, et al. Measuring the Transition Readiness of Youth with Special Healthcare Needs: Validation of the TRAQ—Transition Readiness Assessment Questionnaire. J. Pediatr. Psychol. (2011) 36(2): 160-171

11. JaxHATS

12. Ready, Set, Stop: Mismatch Between Self-Care Beliefs, Transition Readiness Skills, • Transition Planning Among Adolescents, Young Adults, and Parents – Sawicki et al 2014 • High confidence in self care but reported low scores for discrete readiness • measures like knowing medications (ex). There is a disconnect. • Transition readiness Skills Acquestion in adolescents and young adults with • inflammatory bowel disease: findings from integrating assessment into clinical practice – • Inflam Bowel Dis. 5/2015 • Most are not demonstrating transition readiness by TRAQ questionnaire, transition • readiness associated with older age (P<0.001) and female (P<0.001)

13. UNC-CH - STARx • Developed by UNC Kidney Care/Pediatrics. Self-management and Transition from pediatric to Adult-focused health care with Rx=treatment (STARx) Program • – 3 sections, 18 questions! • UNC-CH / Kidney Care started founded the STARx program in 2006, the main focus was to develop and improve self-management skills and disease knowledge among adolescents and young adults with chronic health conditions. • Spanish and English versions • Also a more comprehensive TRxANSITIONquestionnaire was developed (Sex/Reproduction addressed – big difference)

14. UNC-CH – STARxSection 1

15. UNC-CH – STARxSection 2

16. UNC-CH – STARxSection 3

17. UNC-CH - TRxANSITION • T – Type of Chronic Health Condition ( ex: Name of your illness?) • Rx – Medications (ex: What are the names of your meds? When do you take them? • A - Adherence (ex: Do you usually have trouble remembering your meds?) • N - Nutrition (ex: Are you supposed to follow any special diet?) • S - Self-management skills (ex: Do you make your own MD appointments?) • I - Issues of reproduction (ex: Would your condition affect your ability to become pregnant?) • T - Trade/School (ex: Future plans in regards to school/job?) • I - Insurance (ex: What’s the name of your health insurance provider?) • O - Ongoing support (ex: when you are an adult, who will help you?) • N - New health care providers (ex: When it comes for you to switch to an adult MD, how will you find one?)

18. UNC-CH - TRxANSITION • T – Type of Chronic Health Condition ( ex: Name of your illness?) • Rx – Medications (ex: What are the names of your meds? When do you take them? • A - Adherence (ex: Do you usually have trouble remembering your meds?) • N - Nutrition (ex: Are you supposed to follow any special diet?) • S - Self-management skills (ex: Do you make your own MD appointments?) • I - Issues of reproduction (ex: Would your condition affect your ability to become pregnant?) • T - Trade/School (ex: Future plans in regards to school/job?) • I - Insurance (ex: What’s the name of your health insurance provider?) • O - Ongoing support (ex: when you are an adult, who will help you?) • N - New health care providers (ex: When it comes for you to switch to an adult MD, how will you find one?)

19. UNC-CH - TRxANSITION • T – Type of Chronic Health Condition ( ex: Name of your illness?) • Rx – Medications (ex: What are the names of your meds? When do you take them? • A - Adherence (ex: Do you usually have trouble remembering your meds?) • N - Nutrition (ex: Are you supposed to follow any special diet?) • S - Self-management skills (ex: Do you make your own MD appointments?) • I - Issues of reproduction (ex: Would your condition affect your ability to become pregnant?) • T - Trade/School (ex: Future plans in regards to school/job?) • I - Insurance (ex: What’s the name of your health insurance provider?) • O - Ongoing support (ex: when you are an adult, who will help you?) • N - New health care providers (ex: When it comes for you to switch to an adult MD, how will you find one?)

20. UNC-CH - TRxANSITION • T – Type of Chronic Health Condition ( ex: Name of your illness?) • Rx – Medications (ex: What are the names of your meds? When do you take them? • A - Adherence (ex: Do you usually have trouble remembering your meds?) • N - Nutrition (ex: Are you supposed to follow any special diet?) • S - Self-management skills (ex: Do you make your own MD appointments?) • I - Issues of reproduction (ex: Would your condition affect your ability to become pregnant?) • T - Trade/School (ex: Future plans in regards to school/job?) • I - Insurance (ex: What’s the name of your health insurance provider?) • O - Ongoing support (ex: when you are an adult, who will help you?) • N - New health care providers (ex: When it comes for you to switch to an adult MD, how will you find one?)

21. GOTTRANSITION .ORG Checklist UNC-CH - TRxANSITION • T – Type of Chronic Health Condition ( ex: Name of your illness?) • Rx – Medications (ex: What are the names of your meds? When do you take them? • A - Adherence (ex: Do you usually have trouble remembering your meds?) • N - Nutrition (ex: Are you supposed to follow any special diet?) • S - Self-management skills (ex: Do you make your own MD appointments?) • I - Issues of reproduction (ex: Would your condition affect your ability to become pregnant?) • T - Trade/School (ex: Future plans in regards to school/job?) • I - Insurance (ex: What’s the name of your health insurance provider?) • O - Ongoing support (ex: when you are an adult, who will help you?) • N - New health care providers (ex: When it comes for you to switch to an adult MD, how will you find one?)

22. Compare/Contrast

23. GotTransition.org – 6 core elements • Transition Policy (this conference’s goal) • Transition Tracking and Monitoring • Transition Readiness • Transitional Planning • Transfer of Care • Transfer Completion

26. 3 toolkits for 3 scenarios: Transitioning Youth to Adult Health Care Providers (Peds, FM, Med-Peds) Transitioning to Adult Approach to Health Care Providers WITHOUT changing providers (FM and Med-Peds) Integrating Young Adults into Adult Health Care (Internal Med, FM, Med-Peds)

27. GotTransition.org – 6 core elements • Transition Policy (GHS subspecialists?) • Transition Tracking and Monitoring • Transition Readiness • Sample Transitional Readiness Assessment for Youth* • Sample Transitional Readiness Assessment for Parents/Caregivers* • Transitional Planning • Transfer of Care • Transfer Completion

29. MY HEALTH • “I know my medications, what they are for, when I need to take them” • USING HEALTHCARE • How the patient “navigates” • healthcare • “ I know my current plan of care” • “ I know where my current pharmacy is and how to fill my meds”

30. TRANSITION IMPORTANCE AND CONFIDENCE

31. GotTransition.org – 6 core elements • Transition Policy (GHS subspecialists?) • Transition Tracking and Monitoring • Transition Readiness • Transitional Planning - Sample Plan of Care - Sample Medical Summary & Emergency Care Plan - Sample Condition Fact Sheet • Transfer of Care • Transfer Completion

32. GotTransition.org – 6 core elements • Transition Policy (GHS subspecialists?) • Transition Tracking and Monitoring • Transition Readiness • Transitional Planning - Sample Plan of Care - Sample Medical Summary & Emergency Care Plan - Sample Condition Fact Sheet • Transfer of Care • Transfer Completion

33. GotTransition.org – 6 core elements • Transition Policy (GHS subspecialists?) • Transition Tracking and Monitoring • Transition Readiness • Transitional Planning - Sample Plan of Care - Sample Medical Summary & Emergency Care Plan - Sample Condition Fact Sheet • Transfer of Care • Transfer Completion This will serve as a Medical Passport – main Diagnoses, PMH/PSH, Meds/All, Key contacts, etc.

34. GotTransition.org – 6 core elements • Transition Policy (GHS subspecialists?) • Transition Tracking and Monitoring • Transition Readiness • Transitional Planning • Transfer of Care - Sample Transfer of Care Checklist - Sample Transfer Letter* • Transfer Completion - Sample Transition Feedback Survey for Youth and Parents/Caregiver

35. GotTransition.org – 6 core elements • Transition Policy (GHS subspecialists?) • Transition Tracking and Monitoring • Transition Readiness • Transitional Planning • Transfer of Care - Sample Transfer of Care Checklist - Sample Transfer Letter • Transfer Completion - Sample Transition Feedback Survey for Youth and Parents/Caregiver

36. The Readiness Scores don’t tell us about the “Perfect Storm,” • health literacy, incorrect self-reporting, socioeconomic barriers, • concurrent mental illness, fears • The HEADS AT is an adaptation of HEADSS psychosocial review • for adolescents.

37. ADOLESCENT Home & Environment Education (Bullying) & Employment Activities D rugs/Drinking Sexuality Suicide/Depression The HEADS AT is an adaptation of HEADSS psychosocial review for adolescents.

38. TRANSITION H ome & Environment – ADLs, services, equipment, mobility E ducation (Bullying) & Employment – IEP, OT, PT, ST, Adaptive communication, job/vocation training A ctivities – Peers, Interest, Socialization D evelopment/Drugs/Depression – Coping? Depression, Agitation, Abuse, EtOH, Tob, Illicits Specialist – Cards, GI, etc, last/next visit and main diagnoses (I would add sexuality here) A ncillary – therapies, agencies T ransition/Goals - Future vision, Guardianship /Will, Knows meds, Knows about illness ADOLESCENT Home & Environment Education (Bullying) & Employment Activities D rugs/Drinking Sexuality Suicide/Depression The HEADS AT is an adaptation of HEADSS psychosocial review for adolescents.

39. Novel resources and tools(1) • Online Resources (in addition to Got Transition.org) • Autism Speaks/ Autism Intervention Research Network on Physical Health  Parental Tool • Rare Toolkits – Global Genes Project • SickKids.com • Healthcare Transition Research Consortium (HTRC) – new research • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Camp Spike and Dome), Camp Courage (Greenville, SC)

40. Novel support tools & projects • Online Resources (in addition to GotTransition.org): Autism Intervention Research Network on Physical Health Rare Toolkits – Global Genes Project SickKids.com Healthcare Transition Research Consortium (HTRC) • Transition Coordinators/Navigator Model in DM1 HEADS-AT Training Tool for Residents • Transition Clinics / Good 2 Go Transition Program (Good 2 Go) • Medical Passport (UNC and SickKids) • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Summer 2014); and Victory Junction (UNC) • Mentoring Programs – Partners in Youth with Disability • Advance Care Planning / Guardianship • Adolescents Transitioning to Leadership and Success (ATLAS). Based on the CHIPS program. • Academics: Residency curriculum - HEADS-AT and QI

41. Novel support tools & projects • Online Resources (in addition to GotTransition.org): Autism Intervention Research Network on Physical Health Rare Toolkits – Global Genes Project SickKids.com Healthcare Transition Research Consortium (HTRC) • Transition Coordinators/Navigator Model in DM1 HEADS-AT Training Tool for Residents • Transition Clinics / Good 2 Go Transition Program (Good 2 Go) • Medical Passport (UNC and SickKids) • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Summer 2014); and Victory Junction (UNC) • Mentoring Programs – Partners in Youth with Disability • Advance Care Planning / Guardianship • Adolescents Transitioning to Leadership and Success (ATLAS). Based on the CHIPS program. • Academics: Residency curriculum - HEADS-AT and QI

42. Novel support tools & projects • Online Resources (in addition to GotTransition.org): Autism Intervention Research Network on Physical Health Rare Toolkits – Global Genes Project SickKids.com Healthcare Transition Research Consortium (HTRC) • Transition Coordinators/Navigator Model in DM1 HEADS-AT Training Tool for Residents • Transition Clinics / Good 2 Go Transition Program (Good 2 Go) • Medical Passport (UNC and SickKids) • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Summer 2014); and Victory Junction (UNC) • Mentoring Programs – Partners in Youth with Disability • Advance Care Planning / Guardianship • Adolescents Transitioning to Leadership and Success (ATLAS). Based on the CHIPS program. • Academics: Residency curriculum - HEADS-AT and QI

43. Novel resources and tools(1) • Online Resources (in addition to Got Transition.org) • Autism Speaks/ Autism Intervention Research Network on Physical Health • Rare Toolkits – Global Genes Project • SickKids.com (QI – Transitional Website?) • Healthcare Transition Research Consortium (HTRC) – new research • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Camp Spike and Dome), Camp Courage (Greenville, SC)

44. Novel support tools & projects • Online Resources: - Autism Speaks/ Autism Intervention Research Network on Physical Health - Rare Toolkits – Global Genes Project - SickKids.com • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Summer 2014); and Victory Junction (UNC) • Mentoring Programs – Partners in Youth with Disability • Transition Coordinators/Navigator Model in DM1 HEADS-AT Training Tool for Residents • Transition Clinics / Good 2 Go Transition Program (Good 2 Go) • Medical Passport (UNC and SickKids) • Advance Care Planning / Guardianship “RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare diseases” - Pediatric Palliative Care, Mitochondrial disorders, etc

45. Novel resources and tools(1) • Online Resources (in addition to Got Transition.org) • Autism Speaks/ Autism Intervention Research Network on Physical Health • Rare Toolkits – Global Genes Project • SickKids.com (Transitional Website QI?) • Healthcare Transition Research Consortium (HTRC) – new research • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Camp Spike and Dome), Camp Courage (Greenville, SC)

46. Novel support tools & projects • Online Resources (in addition to Got Transition.org) Autism Speaks/ Autism Intervention Research Network on Physical Health Rare Toolkits – Global Genes Project SickKids.com Healthcare Transition Research Consortium • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Summer 2014); and Victory Junction (UNC) • Mentoring Programs – Partners in Youth with Disability • Transition Coordinators/Navigator Model in DM1 HEADS-AT Training Tool for Residents • Medical Passport (UNC and SickKids) • Advance Care Planning / Guardianship • Adolescents Transitioning to Leadership and Success (ATLAS). • Academics: Residency curriculum - HEADS-AT and QI

47. Novel resources and tools(1) • Online Resources (in addition to Got Transition.org) • Autism Speaks/ Autism Intervention Research Network on Physical Health • Rare Toolkits – Global Genes Project • SickKids.com (QI – Transitional Website?) • Healthcare Transition Research Consortium (HTRC) – new research • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Camp Spike and Dome), Camp Courage (Greenville, SC)

48. Novel support tools & projects • Online Resources: Autism Intervention Research Network on Physical Health Rare Toolkits – Global Genes Project SickKids.com • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Summer 2014); and Victory Junction (UNC) • Mentoring Programs – Partners in Youth with Disability • Transition Coordinators/Navigator Model in DM1 HEADS-AT Training Tool for Residents • Transition Clinics / Good 2 Go Transition Program (Good 2 Go) • Medical Passport (UNC and SickKids) • Advance Care Planning / Guardianship • Adolescents Transitioning to Leadership and Success (ATLAS). Based on the CHIPS program. • Healthcare Transition Consortium and Got Transition.org • Academics: Residency curriculum - HEADS-AT and QI

49. Novel resources and tools(1) • Online Resources (in addition to Got Transition.org) • Autism Speaks/ Autism Intervention Research Network on Physical Health • Rare Toolkits – Global Genes Project • SickKids.com (QI – Transitional Website?) • Healthcare Transition Research Consortium (HTRC) – new research • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Camp Spike and Dome), Camp Courage (Greenville, SC)

50. Novel support tools & projects • Online Resources: Autism Intervention Research Network on Physical Health Rare Toolkits – Global Genes Project SickKids.com • Camps: Epilepsy Foundation of Texas transition program during a weeklong summer camp (Summer 2014); and Victory Junction (UNC) • Mentoring Programs – Partners in Youth with Disability • Transition Coordinators/Navigator Model in DM1 HEADS-AT Training Tool for Residents • Transition Clinics / Good 2 Go Transition Program (Good 2 Go) • Medical Passport (UNC and SickKids) • Advance Care Planning / Guardianship • Adolescents Transitioning to Leadership and Success (ATLAS). Based on the CHIPS program. • Healthcare Transition Consortium and Got Transition.org • Academics: Residency curriculum - HEADS-AT and QI