Short Bowel Syndrome IMPACT Initiative: An Initiative to Individualize Treatment and Improve the Pediatric to Adult Healthcare Transition

Short Bowel Syndrome (SBS)
Pediatric to Adult Transition of Care Tool Kit
Full abbreviations, accreditation, and disclosure information available at
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Transitioning Adolescent Patients With Short Bowel
Syndrome and Chronic Intestinal Failure to Adult Care
As more children with SBS and IF are now surviving into adulthood, patients and their families often struggle
with the transition to adult care. This tool kit has sample forms and tools adapted from the Six Core Elements
of Health Care Transition 3.01
that clinicians can use to assist youth/young adults with SBS as they transition
from a pediatric-centered to an adult-centered model of healthcare.
Sample transition implementation tools have been developed for each step of the transition process.
Forms/tools in this tool kit include the following.
Step 1: Transition and Care Policy/Guide
• Step 1 Tool: Sample Transition and Care Policy/Guide ……...........................………...........…………..………........pg 2
Step 2: Tracking And Monitoring
• Step 2 Tool: Sample Transition Registry ……............................………………………….........…...............................pg 3
• Step 2 Tool: Sample Transition Flow Sheet …..............................……………………………....................................pg 4
Step 3: Transition Readiness/Orientation to Adult Practice
• Step 3 Tool: Sample Transition Readiness Assessment Questionnaire (TRAQ) .....................…….....….......…..pg 5
Step 4: Transition Planning/Integration Into Adult Practice
• Step 4 Tool: Sample Plan of Care …………………...........................………...………………..................……….……pg 6
• Step 4 Tool: Sample Medical Summary and Emergency Care Plan ..........................…........…........…..............pg 7
Step 5: Transfer of Care/Initial Visits With Adult Provider
• Step 5 Tool: Sample Transfer Letter to Adult Provider …............................………………......…………….……...pg 11
• Step 5 Tool: Sample Transfer of Care Checklist ….........................…………………….....…….……………........pg 12
Step 6: Transfer Completion or Ongoing Care
• Step 6 Tool: Sample Healthcare Transition Feedback Survey for Youth/Young Adults ................................pg 13
• Step 6 Tool: Sample Healthcare Transition Feedback Survey for Parents/Caregivers .......….......................pg 14

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Step 1 Tool: Sample Transition and Care Policy/Guide1
[Pediatric Practice Name] cares about you.
We will help you move smoothly from pediatric to adult healthcare. This means working with you, starting at ages 12
to 14, and your parent/caregiver to prepare for the change from a pediatric model of care to an adult model of care. A
pediatric model of care is where parents/caregivers make most choices. An adult model of care is where you will make
your own choices. We will spend time during visits without your parent/caregiver in the room to help you set health goals
and take control of your own healthcare.
By law, you are an adult at age 18. We will only discuss your health information with others if you agree. Some young
adults choose to still involve their parents/caregivers or others in their healthcare choices. To allow your doctor to share
information with them, consent is required. We have these forms at our practice. For young adults who have a condition
that limits them from making healthcare choices, our office will share with parents/caregivers options for how to support
decision-making. For young adults who are not able to consent, we will need a legal document that describes the
person’s decision-making needs.
We will work with you to decide the age for moving to an adult doctor. We suggest that this move take place before
age 22. Our office policy is to prepare you to move to an adult doctor. This includes helping you find an adult doctor,
sending medical records, and talking about any special needs with the adult doctor. We will help you find community
resources and specialty care, if needed.
Your health matters to us. As always, if you have any questions, please feel free to contact us.

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Step 2 Tool: Sample Transition Registry1
Name DOB Appt Age
Primary
Diagnosis
HCT
Policy/
Guide
Shared
With
Y/YA/
Parent/
Caregiver
HCT
Readiness
Assessment
Conducted
HCT
Readiness
Education/
Counseling
Provided
HCT Plan
of Care
Shared
With
Y/YA/
Parent/
Caregiver
Medical
Summary
and
Emergency
Care Plan
Shared
With Y/YA/
Parent/
Caregiver
Age 18
Privacy
and
Consent
Changes
Discussed
Supported
Decision-
Making
Discussed
(If
Needed)
Adult
Clinician
Selected
Adult
Clinician
Contacted
Transfer
Package
Sent to
Adult
Clinician
Feedback
About
HCT From
Y/YA/
Parent/
Caregiver
First
Appt
With
Adult
Clinician
Initial
Adult
Appt
Attended
(Date
or
Blank)
(At
Time
of
Appt)
(Yes or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)
(Date or
Blank)

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Step 2 Tool: Sample Transition Flow Sheet1
Preferred name
Primary diagnosis
Transition and care policy/guide shared/discussed
with youth and parent/caregiver
Phone, fax, or email
Name
Selected adult clinician:
Practice Date first appointment scheduled
Social/medical complexity information
Legal name Date of birth
TRANSITION AND CARE POLICY/GUIDE
Date
Date Date Date
Date Date Date
Date Date Date
Date Date Date
Date
Date
Date
Date
Date
Date
Date
Date Date
Conducted transition readiness assessment
TRANSITION READINESS ASSESSMENT
Updated and shared the medical summary
and emergency care plan
PLAN OF CARE/MEDICAL SUMMARY AND EMERGENCY CARE PLAN
Discussed changes in decision-making, consent, and
privacy (eg, medical records) in an adult model of care
ADULT MODEL OF CARE
TRANSFER OF CARE
Prepared transfer package including
□ Transfer letter, including date of transfer of care
□ Final transition readiness assessment
□ Plan of care, including transition goals and prioritized actions
□ Medical summary and emergency care plan
□ Guardianship or health proxy documents, if needed
□ Condition fact sheet, if needed
□ Additional clinician records, if needed
Included transition goals and prioritized
actions in youth’s plan of care
Discussed legal options for supported
decision-making, if needed
Discussed needed transition readiness skills
Updated and shared the plan of care, if needed
Communicated with adult clinician about transfer
Sent transfer package
Elicited anonymous feedback from youth/young adult and
parent/caregiver about the HCT supports received in the
pediatric practice while transitioning to adult care

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a
Scoring instructions for the TRAQ can be found at https://www.etsu.edu/com/pediatrics/traq/questions.php.
Step 3 Tool: Transition Readiness Assessment Questionnaire (TRAQ)2,a
No,
I Do Not
Know
How
No,
But I Want
to Learn
No,
But I Am
Learning
to Do This
Yes,
I Have
Started
Doing
This
Yes,
I Always
Do This
When I
Need To
Managing Medications
Appointment Keeping
1. Do you fill a prescription if you need to?
3. Do you take medications correctly and on your own?
4. Do you reorder medications before they run out?
5. Do you call the doctor’s office to make an appointment?
6. Do you follow up on any referral for tests, checkups, or labs?
2. Do you know what to do if you are having a bad reaction
to your medications?
7. Do you arrange for your ride to medical appointments?
8. Do you call the doctor about unusual changes in your
health (eg, allergic reactions)?
9. Do you apply for health insurance if you lose your
current coverage?
11. Do you manage your money and budget household
expenses (eg, use checking/debit card)?
Tracking Health Issues
10. Do you know what your health insurance covers?
13. Do you keep a calendar or list of medical and other
appointments?
Talking With Providers
Managing Daily Activities
14. Do you make a list of questions before the doctor’s visit?
16. Do you tell the doctor or nurse what you are feeling?
18. Do you help plan or prepare meals/food?
15. Do you get financial help with school or work?
17. Do you answer questions that are asked by the doctor,
nurse, or clinic staff?
19. Do you keep home/room clean or clean up after meals?
20. Do you use neighborhood stores and services
(eg, grocery stores and pharmacy stores)?
12. Do you fill out the medical history form, including a list
of your allergies?
Patient name: Date of birth: Today’s date (MRN# _______)
Directions to Youth and Young Adults: Please check the box that best describes your skill level in the following areas
that are important for transition to adult healthcare. There is no right or wrong answer and your answers will remain
confidential and private.
Directions to Caregivers/Parents: If your youth or young adult is unable to complete the tasks below on
their own, please check the box that best describes your skill level. Check here if you are a parent/caregiver
completing this form.

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Step 4 Tool: Sample Plan of Care1
Preferred name Legal name Date of birth
Primary diagnosis Secondary diagnosis
Clinician/care staff name Date plan created/updated
Clinician/care staff contact information Clinician/care staff signature
Youth signature Parent/caregiver signature
This sample plan of care is created jointly with youth and their parent/caregiver to set goals and outline a plan
of action that combines health and personal goals. Information from the transition readiness assessment can be
used to develop goals. The plan of care should be updated often and sent to the new adult clinician as part of
the transfer package
What matters most to you as you become an adult? How can learning more about your health needs
and learning how to use healthcare support your goals?
Youth’s
Prioritized
Goals
Transition
Issues
or Concerns
Person
Responsible
Target
Date
Date
Completed
Actions

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Step 4 Tool: Sample Medical Summary and Emergency Care Plan1
Preferred name Legal name
CONTACT INFORMATION
PLEASE SHARE SOME SPECIAL INFORMATION THAT THE YOUTH OR PARENT/CAREGIVER WANTS
THEIR NEW HEALTHCARE CLINICIAN TO KNOW (eg, they enjoy baseball, they play the piano).
□ Limited decision-making legal documents available, if needed □ Disaster preparedness plan completed
This document should be shared with the youth and parent/caregiver. Attach the immunization record to this form.
EMERGENCY CARE PLAN
Date of birth Preferred language
Cell phone/home phone Best time to reach
Address
Email Best way to reach (text, phone, email)
Health insurance and/or plan Group and ID numbers
Parent/caregiver name
Preferred emergency care location
Phone
Relationship
Emergency contact Phone
Relationship
Common Emergent
Presenting Problems
Suggested Tests Treatment Considerations

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Step 4 Tool: Sample Medical Summary
and Emergency Care Plan (Cont’d)1
ALLERGIES AND PROCEDURES TO BE AVOIDED
□ Medical procedures
□ Medications
□ Primary diagnosis
□ Secondary diagnosis
□ Behavioral
□ Communication
□ Feeding and swallowing
□ Hearing/vision
□ Learning
□ Orthopedic/musculoskeletal
□ Physical anomalies
□ Respiratory
□ Sensory
□ Stamina/fatigue
□ Other
DIAGNOSES AND CURRENT PROBLEMS
MEDICATIONS
Allergies Reactions
To Be Avoided Why?
Problem Details and Recommendations
Medications Dose Frequency Medications Dose Frequency

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HEALTHCARE CLINICIANS
Clinician’s name Primary/(sub)specialty
Surgery/procedure/hospitalization
Date
Surgery/procedure/hospitalization
Date
Neurological status
Clinic or hospital Phone
Clinician’s name Primary/(sub)specialty
Clinic or hospital Phone
PRIOR SURGERIES, PROCEDURES, AND HOSPITALIZATIONS
BASELINE
MOST RECENT LABS AND RADIOLOGY
EQUIPMENT, APPLIANCES, AND ASSISTIVE TECHNOLOGY
Fax
Fax
Vital signs:
Height Weight RR HR BP
Test Result Date
Test Result Date
Test Result Date
□ Gastrostomy
□ Tracheostomy
□ Suctions
□ Nebulizer
□ Communication device
□ Adaptive seating
□ Wheelchair
□ Orthotics
□ Crutches
□ Walker
□ Other(s): ______________
□ Monitors:
□ Apnea
□ O2
□ Cardiac
□ Glucose

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SCHOOL AND COMMUNITY INFORMATION
Agency/school
IMPORTANT NEXT STEPS
Contact person Phone
Agency/school Contact person Phone
Agency/school Contact person Phone
Next step(s)
Next appointment(s)
Youth signature Date
Print name Phone
Parent/caregiver signature Date
Print name Phone
Clinician/care staff signature Date
Print name Phone

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Step 5 Tool: Sample Transfer Letter to Adult Provider1
[Date]
Dear [Adult Clinician Name],
[Name] is a(n) [age]-year-old patient of our pediatric practice who will be transferring to your care. Their primary
chronic condition is [condition], and their secondary conditions are [conditions]. [Name’s] related medications and
specialists are outlined in the enclosed transfer package that includes their medical summary and emergency care
plan, plan of care, and final transition readiness assessment. [Name] acts as their own guardian and is currently
insured under [insurance plan].
The needed next steps in [Name’s] plan of care are ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ .
[Name] would like you to know the following nonmedical information about them: ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ ͟ .
I have had [Name] as a patient since [age] and am very familiar with their health condition, medical history, and
specialists. Our practice will provide care for them, such as refilling medications, until they come to the first visit in your
practice. Please send us a note or call when [Name] has attended their first appointment in your practice. I would be
happy to provide any consultation assistance to you during the initial phases of [Name’s] transition to your practice.
Please do not hesitate to contact me by phone or email if you have any questions.
Thank you very much for your willingness to care for [Name].
Sincerely,
Pediatric clinician name
Email Phone

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Step 5 Tool: Sample Transfer of Care Checklist3
Preferred name
Primary diagnosis
Social/medical complexity information
Legal name Date of birth
PRIOR TO TRANSFER
□ Determine transition criteria/review facility policy for HCT
□ Conduct a transition readiness assessment
□ Reassess readiness if needed
□ Establish transition care team
□ Establish healthcare transition coordinator
□ Select an adult provider
□ Determine patient self-care goals and goals for transfer
□ Update medical summary and emergency plan
□ If needed, establish surrogate decision-making authority
□ Transition patient to a nutrition regimen that is appropriate for patient and feasible for adult provider
□ Obtain consent for transfer of records
AFTER TRANSFER
□ Communicate with adult provider about transfer; consult as needed
□ Follow up with patient about transfer
DURING TRANSFER
□ Send transfer package to adult provider
Transfer package to include
□ Transfer letter, including date of transfer of care
□ Final transition readiness assessment
□ Plan of care, including transition goals and prioritized actions
□ Medical summary and emergency care plan
□ Guardianship or health proxy documents, if needed
□ Condition fact sheet, if needed
□ Additional clinician records, if needed
□ Provide insurance resources to patient
Date sent:

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DID YOUR PAST DOCTOR OR OTHER HEALTHCARE PROVIDER...
Please check the answer that best fits at this time.
Yes No
Explain the transition process in a way that you could understand?
Give you guidance about the age you would need to move to a new adult doctor or other
healthcare provider?
□
□
□
□
Give you a chance to speak with them alone during visits?
Explain the changes that happen in healthcare starting at age 18 (eg, changes in privacy,
consent, access to health records, or making decisions)?
□
□
□
□
Help you gain skills to manage your own health and healthcare (eg, understanding current
health needs, knowing what to do in a medical emergency, taking medicines)?
Help you make a plan to meet your transition and health goals?
□
□
□
□
Create and share your medical summary with you?
Explain how to reach the office online or by phone for medical information, test results, medical
records, or appointment information?
□
□
□
□
Advise you to keep your emergency contact and medical information with you at all times
(eg, in your phone or wallet)?
Help you find a new adult doctor or other healthcare provider to move to?
□
□
□
Talk to you about the need to have health insurance as you become an adult? □ □
□
This is a survey about what it was like for you to move from pediatric to adult healthcare. Your answers will help
us improve our healthcare transition process. Your name will not be linked to your answers.
Overall, how ready did you feel to move to an adult doctor or other healthcare provider?
Do you have any ideas for your past doctor or other healthcare provider about making the move to adult
healthcare easier?
□ Very □ Not at all
□ Somewhat
Step 6 Tool: Sample Healthcare Transition Feedback Survey
for Youth/Young Adults1

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1. https://www.gottransition.org/6ce/?how-to-implement. 2. https://www.etsu.edu/com/pediatrics/traq/traqpublications.php.
3. Green Corkins K et al. Nutr Clin Pract. 2018;33:81-89.
DID YOUR CHILD’S PAST DOCTOR OR OTHER HEALTHCARE PROVIDER...
Please check the answer that best fits at this time.
Yes No
Explain the transition process in a way that your child could understand?
Give you and your child guidance about the age your child would need to move to a new
adult doctor or other healthcare provider?
□
□
□
□
Give your child a chance to speak with them alone during visits?
Explain the changes that happen in healthcare starting at age 18 (eg, changes in privacy,
consent, access to health records, or making decisions)?
□
□
□
□
Help your child gain skills to manage their own health and healthcare (eg, understanding current
health needs, knowing what to do in a medical emergency, taking medicines)?
Help your child make a plan to meet their transition and health goals?
□
□
□
□
Create and share your child’s medical summary with you and your child?
Explain to your child how to reach the office online or by phone for medical information,
test results, medical records, or appointment information?
□
□
□
□
Advise your child to keep their emergency contact and medical information with them at all times
(eg, in their phone or wallet)?
Help your child find a new adult doctor or other healthcare provider to move to?
□
□
□
Talk to your child about the need to have health insurance as they become an adult? □ □
□
This is a survey about what it was like for you and your child to move from pediatric to adult healthcare.
Your answers will help us improve our healthcare transition process. Your name will not be linked to your answers.
Overall, how ready did your child feel to move to an adult doctor or other healthcare provider?
□ Very □ Not at all
□ Somewhat
Do you have any ideas for your child’s past doctor or other healthcare provider about making the move to
adult healthcare easier?
Step 6 Tool: Sample Healthcare Transition Feedback Survey
for Parents/Caregivers1

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