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

Methods to Assess Transition Readiness

& other Novel Tools and Resources

Sen Ravindran, PGY4Jill Sullivan, PGY4

Advances in CKD 2011

Disclosures

• We have no commercial relationships to disclose.

Partners in Youth and Disabilities

ObjectivesCompare and contrast validated transition

readiness tools (patient and parent)Discuss Novel Health Care Provider and

Parental resources and support toolsWhat’s happening in subspecialty

transition?

Partners in Youth and Disabilities

Validated transitional readiness tools

1. TRAQ (Transitional Readiness Assessment Questionaire 5.0) – JAX HATS (Jacksonville Health and Transition Services)



2. STARx and TRxANSITION – UNC-CH (Kidney Disease)




3. US Department of Health Resources and Service Administration / Maternal and Child Health Bureau (MCHB) created GotTransition.org Toolkit packages - Six Core Elements.




3. US Department of Health Resources and Service Administration / Maternal and Child Health Bureau (MCHB) created GotTransition.org Toolkit packages - Six Core Elements.

4. Transitional Skills Checklist (Univ of Wisconsin) – Long, comprehensive checklist (not discussed)

Who/What/Where (N. Shah) Stepwise transition with Quizzes Graduation (Sickle Cell)

JaxHATS

JaxHATS

TRAQ

VIDEOS

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

JaxHATS

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)

UNC-CH - STARxDeveloped 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 TRxANSITION questionnaire was developed (Sex/Reproduction addressed – big difference)

UNC-CH – STARxSection 1



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?)






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


































GOTTRANSITION .ORG Checklist

Compare/Contrast

GotTransition.org – 6 core elements

1. Transition Policy (this conference’s goal)

2. Transition Tracking and Monitoring3. Transition Readiness4. Transitional Planning5. Transfer of Care6. Transfer Completion

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)

GotTransition.org – 6 core elements1. Transition Policy (GHS subspecialists?)2. Transition Tracking and Monitoring3. Transition Readiness- Sample Transitional Readiness Assessment

for Youth*- Sample Transitional Readiness Assessment

for Parents/Caregivers*1. Transitional Planning2. Transfer of Care3. Transfer Completion

MY HEALTH“I know my medications, what they are for, when I need to take them”

USING HEALTHCAREHow the patient “navigates” healthcare “ I know my current plan of care”“ I know where my current pharmacy is and how to fill my meds”

TRANSITION IMPORTANCE AND CONFIDENCE

GotTransition.org – 6 core elements1. Transition Policy (GHS subspecialists?)2. Transition Tracking and Monitoring3. Transition Readiness4. Transitional Planning

- Sample Plan of Care- Sample Medical Summary & Emergency

Care Plan- Sample Condition Fact Sheet

1. Transfer of Care2. Transfer Completion

GotTransition.org – 6 core elements1. Transition Policy (GHS subspecialists?)

2. Transition Tracking and Monitoring

3. Transition Readiness

4. Transitional Planning

- Sample Plan of Care

- Sample Medical Summary & Emergency

Care Plan

- Sample Condition Fact Sheet

1. Transfer of Care

2. Transfer Completion





- Sample Plan of Care

- Sample Medical Summary & Emergency

Care Plan

- Sample Condition Fact Sheet

1. Transfer of Care


This will serve as a Medical Passport – main Diagnoses, PMH/PSH, Meds/All,

Key contacts, etc.

GotTransition.org – 6 core elements1. Transition Policy (GHS subspecialists?)2. Transition Tracking and Monitoring3. Transition Readiness4. Transitional Planning5. Transfer of Care

- Sample Transfer of Care Checklist- Sample Transfer Letter*

6. Transfer Completion- Sample Transition Feedback Survey for Youth and Parents/Caregiver





5. Transfer of Care

- Sample Transfer of Care Checklist

- Sample Transfer Letter


- Sample Transition Feedback Survey for Youth and Parents/Caregiver

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.

The HEADS AT is an adaptation of HEADSS psychosocial review for adolescents.

ADOLESCENT H ome & EnvironmentE ducation (Bullying) & EmploymentA ctivitiesD rugs/DrinkingS exualityS uicide/Depression

The HEADS AT is an adaptation of HEADSS psychosocial review for adolescents.

ADOLESCENT H ome & EnvironmentE ducation (Bullying) & EmploymentA ctivitiesD rugs/DrinkingS exualityS uicide/Depression

TRANSITIONH ome & Environment – ADLs, services, equipment, mobilityE ducation (Bullying) & Employment – IEP, OT, PT, ST, Adaptive communication, job/vocation training A ctivities – Peers, Interest, SocializationD evelopment/Drugs/Depression – Coping? Depression, Agitation, Abuse, EtOH, Tob, IllicitsSpecialist – Cards, GI, etc, last/next visit and main diagnoses (I would add sexuality here)A ncillary – therapies, agenciesT ransition/Goals - Future vision, Guardianship /Will, Knows meds, Knows about illness

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 ProjectSickKids.comHealthcare 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)

Novel support tools & projects

• Online Resources (in addition to GotTransition.org): Autism Intervention Research Network on Physical HealthRare Toolkits – Global Genes ProjectSickKids.comHealthcare 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














• Online Resources (in addition to Got Transition.org)Autism Speaks/ Autism Intervention Research

Network on Physical HealthRare Toolkits – Global Genes ProjectSickKids.com (QI – Transitional Website?)Healthcare Transition Research Consortium




• 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


• Online Resources (in addition to Got Transition.org) Autism Speaks/ Autism Intervention Research

Network on Physical Health Rare Toolkits – Global Genes ProjectSickKids.com (Transitional Website QI?)Healthcare Transition Research Consortium




• Online Resources (in addition to Got Transition.org)Autism Speaks/ Autism Intervention Research Network on Physical HealthRare Toolkits – Global Genes ProjectSickKids.comHealthcare Transition Research Consortium


• 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



Network on Physical HealthRare Toolkits – Global Genes ProjectSickKids.com (QI – Transitional Website?)Healthcare Transition Research

Consortium (HTRC) – new research• Camps: Epilepsy Foundation of Texas transition



• Online Resources: Autism Intervention Research Network on Physical HealthRare Toolkits – Global Genes ProjectSickKids.com


• 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



Network on Physical HealthRare Toolkits – Global Genes ProjectSickKids.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)












Novel resources and tools (2)

• Mentoring Programs: Partners in Youth with Disability

• Transition Clinic: ATLAS – Adolescents Transitioning to Leadership and Success – Duke


• Medical Passports (SickKids.com) / Flashdrives

• Academics: Residency curriculum – QI, applying HEADS-AT, bolstering transitional curriculum













Novel resources and tools (2)

• Mentoring Programs: Partners in Youth with Disability

• Transition Clinic: ATLAS – Adolescents Transitioning to Leadership and Success – Duke


• Medical Passports (SickKids.com) / Flashdrives

• Academics: Residency curriculum – QI, applying HEADS-AT, bolstering transitional curriculum (what we’re working on now!)

Healthcare passports (SickKids)






Healthcare passports (UNC)






Outcomes from SubspecialitiesImproved Patient-Reported Outcomes (QOL, Functional status, perceived Health Status) and Positive Patient experience. Chaudhry, SR. Evaluation of a Cystic fibrosis transition program from pediatric to adult care. Pediatr Pulmonology 2013. Univ of Michagan. Survey of 91, 44 went through the CF program, reported improved symptoms/QOLReduced Medical Complications and Greater Adherence to Care. Cadario et al. Transition process of patients with T1 Diabetes from paediatric to the adult health care service: A hospital-based approach. Clinical Endocrinology – 2009. *Survey of 62 pts; 30 underwent a formal transition program and had lower A1c at adult follow-upNew Disease specific questionnaires. Zijlstra et al. Self efficacy in adolescents with IBD: A pilot study of the “IBD yourself,” a disease-specific questionnaire. 2013 Journal of Crohn’s and Colitis. *Correlates with Transition readiness.

Take Home Points There are multiple transitional readiness

assessments tools: TRAQ, STARx, TRxANSITION, GotTransition.org toolkits

Explore their home/social context using HEADS-AT as this may reveal transition barriers

There are multiple numerous novel resources: Autism Speaks, SickKids, RareToolkit, HCTC, Camps, Mentoring programs. Apps/Tech and Medicolegal issues discussed this afternoon

Resident QI opportunities abound!

Take Home Points There are multiple transitional readiness

assessments tools: TRAQ, STARx, TRxANSITION, GotTransition.org toolkits

Explore their home/social context using HEADS-AT as this may reveal transition barriers

There are multiple numerous novel resources: Autism Speaks, SickKids, RareToolkit, HCTC, Camps, Mentoring programs. Apps/Tech and Medicolegal issues this afternoon

Resident QI opportunities abound!This entire conference stemmed from one AAP 7/2014 QI project!

Documents

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