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Transition of Pediatric Patients with Special Health Care Needs to Adult Health Care - Adult-Pediatric - Ambulatory

Transition of Pediatric Patients with Special Health Care Needs to Adult Health Care - Adult-Pediatric - Ambulatory - Clinical Hub, UW Health Clinical Tool Search, UW Health Clinical Tool Search, Clinical Practice Guidelines, In the Clinic


1
Transition of Pediatric Patients with
Special Health Care Needs to Adult
Health Care – Adult/Pediatric –
Ambulatory
Clinical Practice Guideline
Note: Active Table of Contents – Click to follow link
EXECUTIVE SUMMARY ........................................................................................................... 3
SCOPE ................................................................................................................................... 4
METHODOLOGY .................................................................................................................... 4
DEFINITIONS.......................................................................................................................... 5
INTRODUCTION ..................................................................................................................... 6
RECOMMENDATIONS ............................................................................................................ 6
1. Timing of Transition and Transfer of Care ........................................................................... 6
2. Transition Process in Adolescence and Young Adulthood .................................................. 7
4. Transfer to Adult Health Care ............................................................................................ 10
UW HEALTH IMPLEMENTATION ........................................................................................... 12
APPENDIX A. EVIDENCE GRADING SCHEME(S) ...................................................................... 13
APPENDIX B. SAMPLE TRANSITION PLAN RECOMMENDATIONS FORM ................................. 14
REFERENCES ........................................................................................................................ 15
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Contact for Content:
Name: John Frohna, MD- Pediatrics- General
Phone Number: (608) 263-8557
Email Address: jfrohna@pediatrics.wisc.edu

Contact for Changes:
Name: Lindsey Spencer, MS- Center for Clinical Knowledge Management (CCKM)
Phone Number: (608) 890-6403
Email Address: lspencer2@uwhealth.org

Coordinating Team Members:
Tim Chybowski, MD- Pediatrics- General
Mala Mathur, MD- Pediatrics- General
Nicholas Pytel, DO- Pediatrics Resident
Ryan Coller, MD, MPH- Pediatric Complex Care Program
Sarah Ahrens, MD- Medicine- Hospitalists
Ann Schmidt, MD- Medicine- Internal Medicine
William Seiden, MD- Medicine- Internal Medicine
Jennifer Somers, MD- Family Medicine
Mathew Swedlund, MD- Family Medicine
Tracey Bekx, MD- Pediatrics- Endocrinology
Sheryl Henderson, MD- Pediatrics- Infectious Disease
Meg Chin- Population Health
Maia Stitt, MS- Waisman Center
Catherine Arnott Smith- Patient Family Advisor
Amy Whitehead- Patient Family Advisor
Sandy Jacobson- Ambulatory Operations
Jeff Sleeth, MD- Pediatrics- General
Katrina Kramer- Information Services (Ambulatory)
Christine Glad- Information Services (MyChart)
Justin Gleicher- Information Services (MyChart)
Allison Olenski, RN, MPH- Center for Clinical Knowledge Management (CCKM)
Jen Grice, PharmD, BCPS- Center for Clinical Knowledge Management (CCKM)

Review Individuals/Bodies:
Beth Vandenlangenberg- Pediatrics- Endocrinology
Erin Mathias- Organ Transplant Clinical Social Worker
Ellen Sullivan- Organ Transplant Clinical Social Worker
Mary Marcus- Clinical Nutrition- AFCH
Laura LaCoursiere, RN- Medicine- Internal Medicine/General
Kelly Dederich, RN- Family Medicine
Laura Brunner, RN- Pediatric Specialty Clinics

Committee Approvals/Dates:
Clinical Knowledge Management (CKM) Council (Last Periodic Review: 06/23/2016)


Release Date: June 2016 | Next Review Date: June 2019



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3


Executive Summary
Guideline Overview
This guideline is primarily based on the national Got Transition© program1 (a cooperative
agreement between Maternal and Child Health Bureau and The National Alliance to Advance
Adolescent Health) and is influenced by reports and position statements released by the
American Academy of Pediatrics, American Academy of Family Physicians, and American
College of Physicians2,3 and the Agency for Healthcare Research and Quality.4
Recommendations within this document outline the core components and expectations for
transition and transfer of care from pediatric to adult health care in patients with special health
care needs.

Key Practice Recommendations
1. The transition timing should be individualized DQG�WDNH�LQWR�DFFRXQW�WKH�SDWLHQW¶V�FRJQLWLYH�
development, physical abilities, and environment (e.g., socioeconomic characteristics and
psychosocial support).Generally, it is recommended to begin the transition process at age
12, with a written health care transition plan created by age 14, and to complete transfer
between the ages of 18-26 years.3-5 (UW Health Low quality evidence, weak/conditional
recommendation) Health transitions should not occur during a period of health crisis,
especially when support systems are unstable.4 (UW Health Low quality evidence, strong
recommendation)
2. A standard curriculum which includes components related to disease-specific topics (e.g.,
checking laboratory measurements, administering medications, identifying and managing
specific symptoms) and skills training in communication, decision-making, creative problem
solving, assertiveness, self-care, self-determination, and self-advocacy should be followed
throughout the transition process to support learning and patient empowerment.2,4,6,7 (UW
Health Low quality evidence, strong recommendation)
3. Regular assessments of transition readiness should be completed (at least three times
throughout the transition process) in order to identify and discuss patient needs,
understanding and comprehension of medical condition, and identify goals, strengths, or
knowledge gaps in self-care and self-management.1,3,6,8 (UW Health Low quality evidence,
strong recommendation)
4. An individualized transition plan should be documented in the medical record which
establishes priorities developed jointly with the provider and patient/family and outlines a
course of action that integrates health and personal goals.1 (UW Health Very low quality
evidence, strong recommendation)
5. Staff and providers caring for pediatric patients should confirm the date of the first adult
provider appointment, obtain consent from patient/guardian for release of medical
information, and complete a transfer package.3,4,9,10 (UW Health Very low quality evidence,
strong recommendation)
6. Families and caregivers should be encouraged to stay involved during the transition
process, while also allowing patient autonomy and promoting self-care.3,7,11 (UW Health Low
quality evidence, strong recommendation)

Companion Documents
1. Diabetes ± Pediatric/Adult ± Inpatient/Ambulatory Guideline
2. Asthma ± Pediatric/Adult ± Inpatient/Ambulatory Guideline
3. Pediatric Pulmonary Center Publications
a. Caring for Children with Neuromuscular Disorders
b. 0RYLQJ�2Q«�7UDQVLWLRQLQJ�from the Pediatric to Adult Care Team
c. Off to College: A Guide for Young Adults with Chronic Illness
4. Type 1 Diabetes Transition Program (Diabetes Keys to Independence)
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4


External Resources
1. Got Transition: http://www.gottransition.org/index.cfm
2. Health Transition Wisconsin: http://www.healthtransitionwi.org/
3. http://wimedicalhometoolkit.aap.org/transitions/
4. Waisman Center Youth Transition Products:
http://www.waisman.wisc.edu/cedd/youth_prod.php
Scope
Disease/Condition(s): Youth with Special Health Care Needs (YSHCN)

Clinical Specialty: Primary Care, Specialty Care

Intended Users: Physicians, Advanced Practice Providers, Nurses, Social Workers, Care
Coordinators, Case Managers

Objective(s): To outline the rationale for transition from child-oriented to adult-oriented health
care and to provide evidence-based recommendations to ensure clinicians, patients, and
families/caregivers have an understanding of their expectations and roles during the transition
process.

NOTE: Specific recommendations by disease or clinical specialty are relevant to support
successful and efficient transitions of health care; however, the current guideline focuses on the
core components of a successful transition for all patients with special health care needs,
regardless of diagnosis or condition.

Target Population: Pediatric, adolescent and young adult patients with special health care
needs (e.g., typically age 12-26 years) eligible and/or ready for transition from pediatric to adult
health care.

Interventions and Practices Considered:
ξ Patient and family education and skill building
ξ Designation of a lead or transition coordinator
ξ Completion of readiness assessment and development of an individualized transition plan
ξ Completion of the transfer package and provider communication

Major Outcomes Considered:
ξ Health outcomes (e.g., treatment adherence, disease control)
ξ Patient and family satisfaction and quality of life
ξ Provider satisfaction and comfort
Methodology
Methods Used to Collect/Select the Evidence:
Electronic database searches (e.g., PUBMED) were conducted by the guideline author(s) and
workgroup members to collect evidence for review. Expert opinion and clinical experience were
also considered during discussions of the evidence.

Methods Used to Formulate the Recommendations:
The workgroup members agreed to adopt recommendations developed by external
organizations and/or arrived at a consensus through discussion of the literature and expert
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5


experience. All recommendations endorsed or developed by the guideline workgroup were
reviewed and approved by other stakeholders or committees (as appropriate).

Methods Used to Assess the Quality of the Evidence/Strength of the Recommendations:
Recommendations developed by external organizations maintained the evidence grade
assigned within the original source document and were adopted for use at UW Health.

Internally developed recommendations, or those adopted from external sources without an
assigned evidence grade, were evaluated by the guideline workgroup using an algorithm
adapted from the Grading of Recommendations Assessment, Development and Evaluation
(GRADE) methodology (see Figure 1 in Appendix A).

Rating Scheme for the Strength of the Evidence/Recommendations:
See Appendix A for the rating scheme(s) used within this document.

Recognition of Potential Health Care Disparities: Despite inclusion of transition planning in
the 2001 ³1HZ�)UHHGRP�,QLWLDWLYH´, results of the National Survey of Children With Special
Health Care Needs (NS-CSHCN), sponsored by the Maternal and Child Health Bureau,
demonstrated that only 1 in 7 youth with special health care needs received all the necessary
medical transition components outlined.12 Youth with special healthcare needs were no more
likely to receive transition planning than other patients with milder conditions, despite increased
clinical complexity and a greater likelihood to rely more heavily on the healthcare system. High
quality evidence has not been published, but several smaller studies also suggest additional
racial/ethnic disparities among children and young adults with special health care needs.10,13,14

Clinical staff caring for patients with special health care needs should demonstrate cultural
competence and patient-centered care, while remaining cognizant of the potential contributors
for disparities including education, socioeconomic status, primary language and health literacy,
as well as cultural differences related to trust of healthcare providers, and acces to insurance
coverage.13,15
Definitions
ξ Special Health Care Needs: Patients who have or are at increased risk for a chronic
physical, developmental, behavioral, or emotional condition and who also require health and
related services of a type or amount beyond that required by children generally.4

ξ Health Care Transition: The process of preparing for change from a pediatric to an adult
model of health care, with the goal of optimizing health and assisting youth in reaching their
full potential. This often involves purposeful empowerment of the patient by staff, providers,
and family/caregivers to take increasing responsibility and independence.

ξ Transfer of Care: An element of transition that has a defined end point that may vary from
patient to patient which describes the event of an adult provider taking over care from a
pediatric provider.3

ξ Self-management: The ability of a patient, in conjunction with family, community, and
healthcare professionals, to manage symptoms, treatments, lifestyle changes, and
psychosocial, cultural, and spiritual consequences of health conditions.6,16

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ξ Self-care: The healthy lifestyle behaviors undertaken by a patient for optimal growth and
development, or the preventive strategies performed to promote or maintain health.6,16

Introduction
It is estimated that fewer than half of the 750,000 children with special health care needs who
transition to adult care annually in the United States receive adequate support and services.2,4
A number of professional societies (including the American Academy of Pediatrics, American
Academy of Family Physicians, and American College of Physicians) have published
statements which call on the importance of thoughtful and deliberate health care transitions,
however, a standard for consistent and effective health care transitions between pediatric and
adult services at UW Health has yet to be established.1-4

As the number of children with special health care needs reaching adulthood continues to
increase12, and the diversity of their clinical conditions expands, it is critical to provide effective
transitions from pediatric to adult care. This guideline outlines expectations of clinical staff which
care for pediatric and adult patients, as well as those of the patient and their families
throughout the transition process and transfer of care.
Recommendations
The goal of transition from pediatric to adult health care is to maximize lifelong functionality and
potential through the provision of high-quality, patient-centered, developmentally appropriate
health care services that continue uninterrupted as the patient moves from adolescence to
adulthood.5
1. Timing of Transition and Transfer of Care
The transition timing should be individualized DQG�WDNH�LQWR�DFFRXQW�WKH�SDWLHQW¶V�FRJQLWLYH�
development, physical abilities, and environment (e.g., socioeconomic characteristics and
psychosocial support).Generally, it is recommended to begin the transition process at age 12,
with a written health care transition plan created by age 14, and to complete transfer between
the ages of 18-26 years (see Figure 1).3-5 (UW Health Low quality evidence, weak/conditional
recommendation) Insufficient published evidence exists to describe an optimal timing for
transition, especially when multiple clinical VSHFLDOWLHV�DUH�LQYROYHG�LQ�DQ�LQGLYLGXDO�SDWLHQW¶V�
care.2 Staff and providers caring for pediatric patients are encouraged to begin discussing topics
related to transition early (e.g., as soon as a disability or special health care need is identified),
as some qualitative studies have reported perceived benefits to quality of life and/or
patient/family preference.3,9,14 Health transitions should generally begin during a clinic visit, such
as a health maintenance or chronic care management visit.3

Transfer of care is appropriate when the patient demonstrates readiness and an ability to
navigate the adult healthcare system.8,9 (UW Health Low quality evidence, weak/conditional
recommendation) Functional competency assessments should be considered before age 18 to
determine specific support and need for legal guardianship, healthcare power of attorney, or
other legal issues.4 (UW Health Very low quality evidence, weak/conditional recommendation)
Transition or transfer should not occur during a period of health crisis, especially when support
systems are unstable.4,14 (UW Health Low quality evidence, strong recommendation)

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7


Figure 1. Nationally Recommended Health Care Transition Timeline1

2. Transition Process in Adolescence and Young Adulthood
Adolescent (12-17 years) and young adult (18-26 years) patients may complete a variety or
combination of health care transfers such as:
ξ Pediatric specialist to adult primary care and adult specialist*
ξ Pediatric specialist to adult primary care and secondary adult specialist (as determined by
the primary care provider)
ξ General pediatrician to adult primary care**

*Subspecialists or specialists may be maintained, but all adult patients should receive primary care from
an adult provider.5 | **Patients seen by a family practitioner may still benefit from transition care as
increasing responsibility and independence is assumed by the patient as an adult.4

Successful transition requires participation and engagement of the primary medical team,
patient, and their families or support systems. It is important that all individuals recognize that
transition care is an active process, not a single event or passive occurrence. Active
LQYROYHPHQW�LV�UHFRPPHQGHG�UHJDUGOHVV�RI�DQ�LQGLYLGXDO¶V�VSHFLILF�UROH�LQ�WKH�SURFHVV�3,4,10

Expectations of the Patient and their Family/Caregiver(s)
Families and caregivers should be encouraged to stay involved during the transition process,
while also allowing patient autonomy and promoting self-care.3,7,11 (UW Health Low quality
evidence, strong recommendation) Patient autonomy can be facilitated by encouraging
adolescents and young adults to practice future behaviors, such as starting to make their own
appointments, requesting refills for their own medications, or by beginning to learn family and
personal medical history.9,10

It is important for patients and their families to remember that change and transition is a
developmental process, which reflects a continuum of maturation that is usually acquired over
time.8,14 Staff and providers caring for pediatric patients should complete a transition readiness
assessment with the patient at least three times throughout the transition process, in order to
assess any knowledge gaps in their medical conditions and overall readiness for transition.8 In
addition to the themes and topics outlined within the assessment, patients are highly
encouraged to talk to their primary care or specialty care provider about and learn skills related
specifically to their particular medical condition(s). Patients and families should jointly develop
12 years
Introduce
transition
concepts
14 years
Initiate health
care transition
(care plan)
16 years
Prepare
patient and
family for
adult model
of care and
discuss
transfer
18 years
Transition to
adult care
Consider legal
implications
of adulthood
earlier than
18th birthday.
18-22 years
Transfer of
care to adult
medical home
and/or
specialists
23-26 years
Integrate
young adults
into adult care
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8


health goals with the staff and provider(s) using the knowledge gaps and questions identified
through the transition readiness assessment and conversations during clinic visits.

Beginning in early adolescence (or as developmentally appropriate), staff and providers caring
for pediatric patients should begin meeting with patients privately during clinic visits.3,17 (UW
Health Very low quality evidence, strong recommendation) This time allows the patient to begin
becoming more responsible for their own healthcare, without having to rely on their parent or
guardian to answer questions, and also provides an opportunity to discuss sensitive or
confidential topics.

Throughout the transition process patients and their families often report educational needs
regarding the differences between pediatric and adult healthcare, instruction for navigating the
healthcare system, as well as learning about disease-specific information.4,14 This education
should be provided to all patients and their families. (UW Health Low quality evidence, strong
recommendation) Special considerations given to cultural, racial, ethnic, and socioeconomic
aspects and perceptions of the transition process.2,3,7,13 Family and peer support groups or
mentoring programs may also be considered as additional educational opportunities for patients
and their families.4,7 (UW Health Very low quality evidence, weak/conditional recommendation)

Local and National Resources:
ξ Wisconsin Health Transition Initiative
ξ Regional Centers- Community Connections and Resources
ξ Got Transition

Expectations of the Staff and Provider(s) Caring for Pediatric Patients

Introduce the Transition Process
Patients and families should be introduced to transition during a clinic visit, and provided
educational material outlining the philosophies and expectations of the transition process
involving one or more UW Health providers.1,3 (UW Health Low quality evidence, strong
recommendation) Discussions surrounding the future can help to prompt patients and families to
begin thinking about the transition process.9 Staff and providers caring for pediatric patients
should consider asking questions about future plans including education, employment,
independent community living, and needed health care services. (UW Health Very low quality
evidence, weak/conditional recommendation)

Initiate a Jointly Developed Transition Plan
Regular assessments of transition readiness should be completed (at least three times
throughout the transition process) in order to identify and discuss patient needs, understanding
and comprehension of medical condition, and identify goals, strengths, or knowledge gaps in
self-care and self-management.1,3,6,8 (UW Health Low quality evidence, strong recommendation) This
assessment should begin in early adolescence and continue as needed throughout
adolescence and young adulthood.1 (UW Health Low quality evidence, weak/conditional
recommendation)

A variety of assessment tools exist including those specific to a certain disease or clinical
specialty.4,18 For some patients or clinical scenarios, a specialty-specific assessment tool may
be preferred; however the Got Transition TM tool is recommended to generally assess transition
readiness as it relates to chronic care management.18 (UW Health Very low quality evidence,
weak/conditional recommendation)

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Information from the transition readiness assessment can be used to guide the development of
specific health goals. A formal, individualized transition plan developed jointly with the staff,
provider, and patient/family which establishes a course of action that integrates the identified
health and personal goals should be documented in the medical record.1,3,4 (UW Health Moderate
quality evidence, strong recommendation) Motivational interviewing and strength-based counseling
are key approaches in developing a collaborative process and shared decision-making. A
sample form which outlines suggested content to facilitate proper documentation of this
transition plan is included in Appendix B.

Review, Educate, and Update Transition Plan in Preparation for Adult Care
At a minimum the transition plan should be updated or reviewed annually and include patient
goals, issues or concerns, proposed actions or solutions, persons responsible, and timeline for
completion.1,3 (UW Health Very low quality evidence, strong recommendation)

A standard curriculum (see Figure 2) should be followed throughout the transition process to
support learning and patient empowerment.2,4,6,7 (UW Health Low quality evidence, strong
recommendation) The components of the curriculum should include:
1. Focus on illness needs or disease-specific topics (e.g., checking laboratory
measurements, administering medications, identifying and managing specific
symptoms).
2. Activating resources such as skills training in communication, decision-making, creative
problem solving, assertiveness, self-care, self-determination, and self-advocacy.
3. Supporting psychological acceptance and coping mechanisms for living with a chronic
illness (e.g., burden of long-term treatment, addressing nonadherence and barriers, or
coping with psychological effects of the disease).

Pediatric physicians and pediatric nursing staff are encouraged to use anticipatory guidance
(e.g., Bright Futures) throughout Well Child and specialty care clinic visits to inspire and support
D�SDWLHQW¶V�independent decision-making and self-management about health care.3 (UW Health
Low quality evidence, strong recommendation)

Identification or designation of a transition lead may aid in more efficient preparation for adult
health care and can help reduce hospital admissions or gaps in health care.2,4,10 Staff and
providers caring for pediatric patients and their families may consider using the lead as a
centralized contact to coordinate transition activities, especially as the patient gets closer to age
18. (UW Health Low quality evidence, weak/conditional recommendation) Patients and their families
should be prepared for an adult approach to care at age 18, including legal changes in decision-
making and privacy and consent, self-advocacy and access to information.1,19 For patients with
developmental or intellectual disabilities it is important to determine the level of need for
supported decision-making (e.g., guardianship, power-of-attorney). Providers and staff caring
for pediatric patients should make referrals to legal resources as necessary.1 (UW Health Very
low quality evidence, strong recommendation)

Preparation for adult care should also include assisting youth in identifying staff and providers
caring for adult patients, communicating with the selected provider about pending transfer of
care, and/or providing linkages to insurance resources, self-care management information, and
culturally appropriate community supports.1,3,7,14

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Figure 2. Suggested Transition Curriculum Around Medical Condition Management6
12-13 Years 14-15 Years

☐ Identify condition
☐ Signs and symptoms of condition
☐ Medications
☐ Care plan documented
☐ Know when to ask for help

☐ Identify condition
☐ Signs and symptoms of condition
☐ Medications
☐ Care plan documented
☐ Know when to ask for help and how to contact
provider
☐ Begin to know care plan
16-17 Years 18 Years or Older

☐ Identify condition
☐ Signs and symptoms of condition
☐ Medications
☐ Care plan documented
☐ Know when to ask for help and how to
contact provider
☐ Know care plan
☐ Identify appropriate sources of care
(e.g., primary vs. urgent vs. emergent care)
☐ Genetics
☐ Long term goals
☐ Impact of condition on long term health

☐ Identify condition
☐ Signs and symptoms of condition
☐ Medications
☐ Care plan documented
☐ Know when to ask for help and how to contact
provider
☐ Know care plan
☐ Identify appropriate sources of care
(e.g., primary vs. urgent vs. emergent care)
☐ Genetics
☐ Long term goals
☐ Impact of condition on long term health
4. Transfer to Adult Health Care
Efficient and accurate transfers of care from pediatric to adult providers involve clear
communication and an understanding of individual roles and responsibilities.5 A formal hand-off,
�H�J���FHQWUDOL]HG�GRFXPHQWDWLRQ�LQ�WKH�SDWLHQW¶s chart, telephone contact, or clinic visit where
both provider types attend) is recommended depending on the individual SDWLHQW¶V care plan and
disease complexity or severity.4,6 (UW Health Low quality evidence, strong recommendation)

Patients seen by Family Medicine practitioners may not complete a formal hand-off. Instead,
staff and providers caring should treat the patient based on expectations of the adult health care
system and should use the components previously described to promote increasing
responsibility and growth.4,20 (UW Health Low quality evidence, strong recommendation)

Expectations of the Staff and Provider(s) Caring for Pediatric Patients

Complete the Transfer Package
Staff and providers caring for pediatric patients should confirm the date of the first adult provider
appointment, obtain consent from patient/guardian for release of medical information, and
complete a transfer package.3,4,9,10 (UW Health Very low quality evidence, strong recommendation)

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11


The transfer package should include the following:
ξ Final transition readiness assessment (demonstrating successes and deficits),
ξ Plan of care with transition goals and pending actions,
ξ Medical summary* and emergency care plan,
ξ Legal documents, condition fact sheet, and additional provider records (as needed).

*The medical summary should contain basic medical and social data, including individual patient preferences or key
characteristics of individualized care (e.g., communication preferences, family dynamics, etc.). As some adult
providers express concern or discomfort with the management of long-term medical complexities sequelae to
pediatric-onset conditions, key reminders for preventive services, lab monitoring, or other medications should be
suggested by the staff and providers caring for pediatric patients.11,21

The pediatric provider(s) should confirm with the adult provider(s) WKH�SHGLDWULF�SURYLGHU¶V�
responsibility for care until the adolescent or young adult is seen regularly in the adult setting.6
(UW Health Very low quality evidence, strong recommendation) Staff and providers caring for
pediatric patients may offer consultation assistance as needed.

Expectations of the Staff and Provider(s) Caring for Adult Patients

Communicate with Staff and Provider(s) and the Patient/Family
$GXOW�SURYLGHUV�VKRXOG�FRPPXQLFDWH�ZLWK�D�\RXQJ�DGXOW¶V�SHGLDWULF�SURYLGHU�V��DQG�DUUDQJH�IRU�
consultation assistance, if needed. (UW Health Very low quality evidence, strong recommendation)
Prior to the first visit, it is important to ensure receipt of the transfer package from the pediatric
provider(s) and review with appropriate team members.1

Patients and their families may be contacted (possibly by the transition lead) 3-6 months after
the last pediatric visit to confirm transfer of responsibilities to adult practice and elicit feedback
on experience with transition process. (UW Health Very low quality evidence, weak/conditional
recommendation)

Begin Providing Adult Care
During the visit, it is recommended that adult provider(s) discuss the following topics with the
patient: the approach to adult health care (including shared-decision making and reliance on
self-advocacy), privacy and consent, access to information, adherence to care, and preferred
methods of communication, including attending to health literacy needs.1 (UW Health Very low
quality evidence, strong recommendation)

A self-care assessment (transition readiness assessment) should be completed if one was not
done recently. (UW Health Very low quality evidence, weak/conditional recommendation) Staff and
adult care providers should GLVFXVV�WKH�\RXQJ�DGXOW¶V�QHHGV�DQG�JRDOV�LQ�VHOI-care, review
health priorities as part of their care plan and update and share the medical summary and
emergency care plan.

Young adults with special health care needs are at risk for disparities in health care.10,12,13,15
These young adults should receive the same standard of care and have the same preventive
guidelines followed that are provided to those without special health care needs. (UW Health High
quality evidence, strong recommendation) Recommendations for average risk patients are outlined
within the Preventive Health Care ± Pediatric/Adult ± Ambulatory Clinical Practice Guideline.
However, the medical summary included in the transfer package may also include condition or
disease-specific reminders (e.g., revised cancer screening intervals for survivors) provided by
the staff and providers caring for pediatric patients.
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12


UW Health Implementation
Potential Benefits:
ξ Patient-centered and age-appropriate health care
ξ 2SWLPL]DWLRQ�RI�WKH�SDWLHQW¶V�DELOLW\�WR�DVVXPH�DGXOW�UROHV�DQG�IXQFWLRQLQJ
ξ Reduced medical complications
ξ Greater adherence to care
ξ Lower healthcare system costs

Potential Harms:
ξ Poor or miscommunication between pediatric and adult providers and staff9,11,12
ξ Negative feelings by patient or families (e.g., feeling abandoned by pediatric staff)7,12
ξ Lack of insurance coverage and issues related to guardianship4,9
ξ Potential lack of knowledge and expertise of adult providers with pediatric-onset
conditions4,9,11,12

Pertinent UW Health Policies & Procedures
None identified

Patient Resources
1. HFFY #7324- Youth Health Care Transition
2. Transition Health Care Checklist: Preparing for Life as an Adult

Guideline Metrics
1. % of patients who complete the transition readiness assessment a minimum of 3 times.
2. % of patients with completed transfer package
3. % of patients or families who received education (e.g., HFFY #7324)
4. Staff and provider satisfaction surveys

Implementation Plan/Clinical Tools
1. Guideline will be posted on uConnect in a dedicated location for Clinical Practice Guidelines.
2. Release of the guideline will be advertised in the Clinical Knowledge Management Corner
within the Best Practice Newsletter.
3. Content and hyperlinks within clinical tools, documents, or Health Link related to the
guideline recommendations will be reviewed for consistency and modified as appropriate.


Disclaimer
Clinical practice guidelines assist clinicians by providing a framework for the evaluation and
treatment of patients. This guideline outlines the preferred approach for most patients. It is not
LQWHQGHG�WR�UHSODFH�D�FOLQLFLDQ¶V�MXGJPHQW�RU�WR�HVWDEOLVK�D�SURWRFRO�IRU�DOO�SDWLHQWV��,W is
understood that some patients will not fit the clinical condition contemplated by a guideline and
that a guideline will rarely establish the only appropriate approach to a problem.

Copyright © 201� University of Wisconsin Hospitals and Clinics Authority
Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 06/2016CCKM@uwhealth.org

13


Appendix A. Evidence Grading Scheme(s)

Figure 2. GRADE Methodology adapted by UW Health


GRADE Ranking of Evidence
High We are confident that the effect in the study reflects the actual effect.
Moderate We are quite confident that the effect in the study is close to the true effect, but it
is also possible it is substantially different.
Low The true effect may differ significantly from the estimate.
Very Low The true effect is likely to be substantially different from the estimated effect.

GRADE Ratings for Recommendations For or Against Practice
Strong The net benefit of the treatment is clear, patient values and circumstances
are unlikely to affect the decision.
Weak/conditional
Recommendation may be conditional upon patient values and
preferences, the resources available, or the setting in which the
intervention will be implemented.






Copyright © 201� University of Wisconsin Hospitals and Clinics Authority
Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 06/2016CCKM@uwhealth.org

14


Appendix B. Sample Transition Plan Recommendations Form

Transition Plan Recommendations
Purpose: To outline health goals and potential barriers relevant to the healthcare transition. Goals may be informed by the transition readiness assessment.
This form should be completed after the transition meeting and include setting and owner whenever possible.

Patient Summary
[insert patient name] is an [insert brief summary (e.g., age, gender, medical conditions)].

Primary care = Dr. [insert name], transitioned from Dr. [insert name]
Subspecialty care to IM = Drs. [insert name(s)] from pediatrics, Drs. [insert name(s)]

General Notes for future providers include:
ξ Guardianship =
ξ
TRANSITION PLAN RECOMMENDATIONS
SETTING
(INPT,
OUTPT?)
OWNER TIMELINE
ISSUE PLAN
1. 1.
2. 1.
3. 1.
4. 1.
5. 1.
6. 1.
7. 1.
8. 1.
9. 1.
10. 1.



Copyright © 201� University of Wisconsin Hospitals and Clinics Authority
Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 06/2016CCKM@uwhealth.org

15


References
1. Transition G. Six Core Elements of Health Care Transition. Health Care Transition Resources 2014;
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Copyright © 201� University of Wisconsin Hospitals and Clinics Authority
Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 06/2016CCKM@uwhealth.org