Implementation of an Accessible Healthcare Model (ACHD STRONG): Comparing Nurse and Physician Lead Healthcare Transition Education in a RE-AIM Framework

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.

Conditions

• Congenital Heart Disease

Interventions

OTHER

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.

OTHER

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.

OTHER

Participating Provider Interviews and surveys

Before the end of each wave, a brief (15-20 minute) unstructured interview with the healthcare team will be conducted.

OTHER

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.

OTHER

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.

OTHER

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.

Sponsors & Collaborators

• University of Wisconsin, Madison

  lead OTHER

Principal Investigators

• Catherine Allen, MD · UW School of Medicine and Public Health

Study Design

Allocation

NON_RANDOMIZED

Purpose

HEALTH_SERVICES_RESEARCH

Masking

NONE

Model

PARALLEL

Eligibility

Min Age

12 Years

Max Age

26 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2025-12-01

Primary Completion

2026-11-30

Completion

2026-11-30

Countries

• United States

Study Locations