Exploring the Transition Experience from Pediatric to Adult Healthcare Systems from the Perspective of Individuals with Chronic Conditions Arising in Childhood

Exploring the Transition Experience from Pediatric to Adult Healthcare

Systems from the Perspective of Individuals with Disabilities: Project Description

 

Amy Thomas, PT

University of North Carolina at Chapel Hill

DPT Capstone Project 2021

 

BACKGROUND INFORMATION:

As a home-based pediatric physical therapist (PT), I became interested in what is involved during transitioning from child-centered to adult-centered systems of healthcare for youth with special healthcare needs (YSHCN) and their families.  While researching this topic, I discovered an abundance of resources and policies exist surrounding the issue of healthcare transitioning (HCT).  However, there is sparse, in-depth information available about whether or not processes are successfully being implemented or how YSHCN and families themselves have experienced or are experiencing transitions.  HCT has long been discussed in terms of policy-making, system infrastructures, training of healthcare professionals, timing and implementation, and attitudes of stakeholders.  Yet still the process can be confusing and unsuccessful; the literature indicates transition preparedness remains inadequate and healthcare needs of YSHCN are consistently not being met once they no longer qualify for pediatric services.  I invite PTs, as well as other healthcare professionals, to understand not only how transition processes may or may not be working but also to consider what specific roles they might play in promoting smooth HCTs that result in satisfactory, lifelong healthcare provision, self-determination, and quality of life for the vast majority of adults living with chronic health conditions that began in infancy or childhood.

 

CLINICAL QUESTIONS:

1) What is the overall experience of YSHCN and their families during HCT from pediatric to adult-centered systems of healthcare?

2) What specific roles might PTs play to assist YSHCN and their families to successfully transition into adult-centered healthcare systems?

 

STEPS TAKEN:

1) To begin my exploration of the topic of HCT for YSHCN, I created a voicethread, as a final project, for a module of a University of North Carolina at Chapel Hill Doctorate of PT course (PHYT 820) for which I was the Teacher’s Assistant in the Summer of 2020.  The link to this voicethread is:

https://unc.voicethread.com/share/15002350/

2) Using 3 databases (i.e., PubMed, Cochrane Library, and Embase) I performed an extensive literature search and review. I ultimately focused on 19 articles which are referenced here:

AThomas_Evidence Table and References

3) I developed a combination questionnaire/consent form for 2 volunteer participant recruits to complete. Questions were informed by those on the National Survey of Children with Special Health Care Needs (NS-CSHCN) and wording adjusted to address health literacy.  The questionnaire was sent via participants’ preferred methods (i.e., one through the U.S. Postal Service and the other as an e-mail attachment). The questionnaire used and feedback form are accessible here:

AThomas_Capstone Questionnaire and Consents

AThomas_Capstone Evaluation

4) I analyzed the questionnaires completed by 2 adults with cerebral palsy who went through the HCT process as young adults then followed up with them, individually, via interviews conducted on a secure on-line platform.

5) I wrote and submitted 2 different articles, both entitled ‘Roles of Physical Therapists in Healthcare Transitions’, to:

a) a University of North Carolina at Chapel Hill, Department of Allied Health Sciences newsletter. The original draft form of this article was accepted for posting, however, it has since been revised and resubmitted.  The final article may be accessed here:

UNC-CH_PT Newsletter

b) the ‘Viewpoints’ section of the American Physical Therapy Association (APTA) Magazine. This article may be accessed here:

APTA Article_ Viewpoints

 

FUTURE DIRECTIONS:

1) I have submitted a request to the University of North Carolina at Chapel Hill Independent Review Board, Office of Human Research Ethics, to pursue authoring a research article expanding upon my ‘Clinical Questions’.

2) The APTA Magazine editor has agreed to collaborate with me on future projects related to issues of HCT for YSHCN.

3) One of my professional goals involves proposing development of a Combined Sections Meeting (CSM) panel of the APTA to explore how PTs can be involved in helping clients successfully transition from pediatric to adult healthcare systems.

 

ACKNOWLEDGEMENTS:

Deborah Thorpe, PT, PhD for mentoring me, providing advice throughout my PHYT 820 teaching experience, and her availability during the development of this Capstone project.

Laurie Ray, PT, PhD for her support, counsel and excellent recommendations while in her role of Faculty Advisor.  I also thank Dr. Ray for ‘reeling me in’ when my project threatened to become too large.

Susan Attermeier, PT, PhD for her suggestions and feedback about the questionnaire and articles created for this Capstone project, as well as for her enthusiastic endorsement of future directions to take it, while in her role of Committee Member.

Charles Sheets, PT, OCS, SCS, Dip MDT, MS Analytics for agreeing to step in as a Committee Member and his solid feedback about the structure and content of articles created for this Capstone project.

Donald E. Tepper, MA, Editor, Lead Editor/Writer for APTA Magazine for his interest in my topic, willingness to accept my article submission, and eagerness to collaborate on future projects.

Volunteer participants for their interest and generous time spent completing questionnaires and interviews which yielded invaluable information for this Capstone project, as well as those to be pursued in the future.