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

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.

Description

While people born with congenital heart disease (CHD) are living longer lives, the CDC estimates that 4 in 10 of those adults have disabilities and worse outcomes than those with heart defects alone. The investigators found that patients with disabilities were also at higher risk of being lost in the transition from pediatric to adult healthcare. Some adolescent patients with CHD and their families fear the transition to adult healthcare more than open heart surgery. Interventions to improve access for these high-risk patients are urgently needed. Additionally, half of patients face disabiliti…

Eligibility

Age range: 12–26 years
Sex: All
Healthy volunteers: No

Detailed criteria

Inclusion Criteria (Patient Participants): * Diagnosed CHD patients between the ages of 12-26 will be eligible * Able to provide assent when seen by a pediatric or adult congenital cardiologist provider. * A subset of patients will self-identify as having a disability, and or, be identified with disabilities in their medical or educational records. * Participants to provide assent/consent and complete all study activities in English or Spanish * Participants under the age of 18 must have a legal guardian who is able to provide consent in English or Spanish. Exclusion Criteria: * Providers m…

Interventions

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
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

Location

University of Wisconsin
Madison, Wisconsin