Transcript Methods to Assess Transition Readiness and

Methods to Assess Transition Readiness
& other Novel Tools and Resources
Sen Ravindran, PGY4
Jill Sullivan, PGY4
Advances in CKD 2011
Disclosures
• We have no commercial relationships to
disclose.
Partners in Youth and Disabilities
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
Validated transitional readiness tools
1. TRAQ (Transitional Readiness Assessment
Questionaire 5.0) – JAX HATS (Jacksonville
Health and Transition Services)
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)
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.
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.
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 - 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 selfmanagement 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 – STARx
Section 1
UNC-CH – STARx
Section 2
UNC-CH – STARx
Section 3
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?)
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?)
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?)
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?)
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?)
Compare/Contrast
TRxANSITION
32?s
T – Type of Health
condition
Rx – Meds
A – Adherence
N – Nutrition
S – Self-management skills
I – Issues of Reproduction
T- Trade/school
I – Insurance
O – Ongoing support
N – New Healthcare
providers
STARx
18?s
TRAQ
20?s
Self-Management
Transition from Pediatric
to Adult Focused
Healthcare with Rx
Managing medication
Appointment Keeping
(In the past 3 months)
How Often?
Tracking Health Issues
How Much? (Assess
knowledge)
Talking with Providers
How easy or hard?
Managing Daily
Activities
(Comfort level)
GotTransition.org – 6 core elements
1.
2.
3.
4.
5.
6.
Transition Policy (this conference’s goal)
Transition Tracking and Monitoring
Transition Readiness
Transitional Planning
Transfer of Care
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, MedPeds)
GotTransition.org –
6 core elements
1.
2.
3.
-
Transition Policy (GHS subspecialists?)
Transition Tracking and Monitoring
Transition Readiness
Sample Transitional Readiness Assessment for Youth*
Sample Transitional Readiness Assessment for
Parents/Caregivers*
1. Transitional Planning
2. Transfer of Care
3. Transfer Completion
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”
TRANSITION IMPORTANCE AND CONFIDENCE
GotTransition.org – 6 core elements
1.
2.
3.
4.
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
1. Transfer of Care
2. Transfer Completion
GotTransition.org –
6 core elements
1.
2.
3.
4.
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
1. Transfer of Care
2. Transfer Completion
GotTransition.org –
6 core elements
This willsubspecialists?)
serve as a Medical Passport – main
Transition Policy (GHS
Diagnoses, PMH/PSH, Meds/All,
Key contacts, etc.
Transition Tracking and Monitoring
Transition Readiness
Transitional Planning
- Sample Plan of Care
- Sample Medical Summary & Emergency
Care Plan
- Sample Condition Fact Sheet
1. Transfer of Care
2. Transfer Completion
1.
2.
3.
4.
GotTransition.org – 6 core elements
1.
2.
3.
4.
5.
Transition Policy (GHS subspecialists?)
Transition Tracking and Monitoring
Transition Readiness
Transitional Planning
Transfer of Care
- Sample Transfer of Care Checklist
- Sample Transfer Letter*
6. Transfer Completion
- Sample Transition Feedback Survey for Youth
and Parents/Caregiver
GotTransition.org –
6 core elements
1.
2.
3.
4.
5.
Transition Policy (GHS subspecialists?)
Transition Tracking and Monitoring
Transition Readiness
Transitional Planning
Transfer of Care
- Sample Transfer of Care Checklist
- Sample Transfer Letter
6. Transfer Completion
- 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.
ADOLESCENT
H ome & Environment
E ducation (Bullying) & Employment
A ctivities
D rugs/Drinking
S exuality
HEADS AT is an adaptation of HEADSS psychosocial review
SThe
uicide/Depression
for adolescents.
TRANSITION
H ome & Environment – ADLs,
services, equipment, mobility
E ducation (Bullying) & Employment –
IEP, OT, PT, ST, Adaptive
communication, job/vocation training
ADOLESCENT
A ctivities – Peers, Interest, Socialization
H ome & Environment
E ducation (Bullying) & Employment D evelopment/Drugs/Depression –
Coping? Depression, Agitation, Abuse,
A ctivities
D rugs/Drinking
EtOH, Tob, Illicits
S exuality
Specialist – Cards, GI, etc, last/next visit
S uicide/Depression
and main diagnoses (I would add
sexuality here)
A ncillary
– therapies,psychosocial
agencies
The HEADS AT is an adaptation
of HEADSS
review
T ransition/Goals - Future vision,
for adolescents.
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 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)
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
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
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
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)
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
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)
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
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)
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
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)
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
•
•
•
•
•
•
•
•
•
•
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
Novel resources and tools (2)
• Mentoring Programs: Partners in Youth with
Disability
• Transition Clinic: ATLAS – Adolescents
Transitioning to Leadership and Success – Duke
• Transition Coordinators/Navigator Model in DM1
HEADS-AT Training Tool for Residents
• Medical Passports (SickKids.com) / Flashdrives
• Academics: Residency curriculum – QI, applying
HEADS-AT, bolstering transitional curriculum
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
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
Novel resources and tools (2)
• Mentoring Programs: Partners in Youth with
Disability
• Transition Clinic: ATLAS – Adolescents
Transitioning to Leadership and Success – Duke
• Transition Coordinators/Navigator Model in DM1
HEADS-AT Training Tool for Residents
• Medical Passports (SickKids.com) / Flashdrives
• Academics: Residency curriculum – QI, applying
HEADS-AT, bolstering transitional curriculum
(what we’re working on now!)
Healthcare passports (SickKids)
•
•
•
•
•
•
•
•
•
•
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
Healthcare passports (UNC)
•
•
•
•
•
•
•
•
•
•
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
Outcomes from Subspecialities
 Improved 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/QOL
 Reduced 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-up
 New Disease specific questionnaires. Zijlstra et al. Self efficacy in
adolescents with IBD: A pilot study of the “IBD yourself,” a diseasespecific 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
ThisMedicolegal
entire conference
stemmed
one AAP 7/2014 QI project!
issues
thisfrom
afternoon
 Resident QI opportunities abound!