Summary

Eligibility
for people ages 18 years and up (full criteria)
Location
at San Francisco, California
Dates
study started
completion around
Principal Investigator
by Anushree Agarwal, MBBS, MAS
Headshot of Anushree Agarwal
Anushree Agarwal

Description

Summary

The theory-informed digital health intervention, called as "Empower My Congenital Health (EmpowerMyCH)" aims to activate and engage ACHD patients in building confidence toward navigating the adult healthcare system. This tool is built after incorporating the theories of behavior change, gathering inputs from target patients in all stages of its design and implementation. The key features of the tool include a digital medical passport, updated congenital information, community support, and patient stories and advice. The investigators aim to test the acceptability, feasibility, efficacy, and effectiveness of the intervention.

Official Title

Improving Care for Adults With Congenital Heart Disease

Details

The goal of this clinical trial study is to learn whether a digital multi-component intervention would increase the knowledge, self-efficacy, self-advocacy, and patient engagement skills of adults with congenital heart disease (CHD) to confidently navigate the health care system and have timely recommended specialist visits.

The multicomponent intervention contains features such as a digital medical passport, updated health-related specific information, opportunities to engage with CHD community, peer-support, doctor visit reminders, etc. The intervention components are designed with inputs from the patients and the CHD community and have the potential to be adapted on an ongoing basis depending on the needs of the patients.

The main question it aims to answer is:

Does the digital multi-component CHD patient engagement intervention enhance the patient engagement skills and lead to timely specialist visit?

Participants will be recruited from the clinics, through word of mouth, social media, and others. Participants can use the website link or a QR code to sign an electronic consent form to be eligible to participate. Once consented, the participants will receive surveys to collect baseline and health status information as well as intervention components at regular intervals. The study will be available for participants to join on the web or mobile, depending on their preferences.

Keywords

Congenital Heart Disease, Behavior, Health, Quality of Life, Empowerment, Patient, Activation, Patient, Heart Diseases, Congenital Heart Defects, Digital patient empowerment intervention

Eligibility

You can join if…

Open to people ages 18 years and up

You CAN'T join if...

  • developmentally delayed
  • unable to consent

Location

  • UCSF
    San Francisco California 94117 United States

Lead Scientist at UCSF

  • Anushree Agarwal, MBBS, MAS
    Dr. Agarwal is a cardiologist with special interest in adult congenital heart disease (ACHD) and cardio-obstetrics. Her additional include the use of transthoracic echocardiography and cardiopulmonary exercise stress testing.

Details

Status
not yet accepting patients
Start Date
Completion Date
(estimated)
Sponsor
University of California, San Francisco
ID
NCT06581484
Study Type
Interventional
Participants
Expecting 100 study participants
Last Updated