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Implementation of an Accessible Healthcare Model (ACHD STRONG): Comparing Nurse and Physician Lead Healthcare Transition Education in a RE-AIM Framework
Sponsor: University of Wisconsin, Madison
Summary
The study includes patients with congenital heart disease (CHD), as well as their support persons and their providers, who are preparing to make the transition from pediatric to adult care for their CHD. The purpose of this study is to improve the tools available to help find doctors as patients enter adulthood. 200 people with CHD and support people will be enrolled.
Key Details
Gender
All
Age Range
12 Years - 26 Years
Study Type
INTERVENTIONAL
Enrollment
450
Start Date
2025-12-01
Completion Date
2026-11-30
Last Updated
2026-04-30
Healthy Volunteers
No
Conditions
Interventions
Accessible Care Model Visit
Accessible care activities will be performed by the provider following the patient participants enrollment in the study and may be observed by study staff.
Recruitment Interviews
A subset of 3-10 patient participants (plus their health care providers) who consent to be reapproached will complete 30-60 minute recruitment interviews.
Participating Patient-Support Person Interviews
Patients, and their support person if present, may complete a 30-60 minute structured or unstructured interviews following the education session in a standard clinical encounter. Dyadic interviews will be analyzed 5 at a time over three phases of study until saturation.
Participating Patient-Support Person Surveys
Participants will complete a survey led by the study team member to identify factors hypothesized to affect transition including age, ethnicity, race, education, transportation, distance from home to clinic, other children at home, plans for care in the transition from pediatric to adult care.
Participating Provider Interviews and surveys
Before the end of each wave we will conduct brief (15-20 minute) unstructured interviews with the healthcare team.
Unstructured and semi-structured interviews
Semi-structured interviewing is based on the use of an interview guide. Unstructured interviewing is used both as a form of primary data collection and to develop semi-structured interview or survey questions. It is particularly useful know about the lived experience of a participant. In this case, their experiences of transition education and of the clinical encounter.
Locations (1)
University of Wisconsin
Madison, Wisconsin, United States