Improving transitions of care for adults with congenital heart disease

PROJECT SUMMARY/ABSTRACT
There are ~1.4 million adults with congenital heart disease (ACHD) in the US and their number is
increasing by 40,000-50,000/year due to improving pediatric CHD care. Up to 85% of the ACHD patients fail to
establish or maintain ACHD specialist care which results in poor outcomes, the most vulnerable period for these
gaps being at the time of transition and transfer from pediatric to adult healthcare. Transition includes fostering
of patients’ knowledge of their CHD and of self-management and self-efficacy skills needed for lifelong
management of chronic disease. Transfer is the event when a patient's care is taken over by the adult healthcare
team. Since chronic management of CHD interferes with daily life activities (such as job, family planning,
traveling), it is difficult for many of these adults to engage in their own care. Knowledge, self-management, self-
efficacy, and patient activation are important skills for patient engagement, and strategies that enhance these
skills are known to reduce gaps in ACHD care.
Majority of the ACHD patients are young and own smartphones. This provides a unique opportunity to
use mobile app-based intervention as a relatively inexpensive and scalable solution to support ACHD patient
engagement skills. But, for its success, it is critical to incorporate theory of behavior change into its design. Thus,
my central hypothesis is that an automated, interactive, mobile app-based intervention refined using ‘Capability,
Opportunity, Motivation-Behavioral’ theory to evaluate the determinants of behavior can enhance skills known to
support ACHD patient engagement and ACHD specialist visit. To test this hypothesis, Aim 1 will shed light on
the pertinent features of a mobile app to support patient engagement skills using semi-structured interviews of
the ACHD patients, clinicians, researchers, and clinic staff. Aim 2 will use an iterative process with inputs from
an Advisory Board of ACHD patients, clinicians, and researchers to design and revise an automated interactive
user-friendly app. Aim 3 will carry out a pilot study to determine feasibility and acceptability of the mobile app to
enhance ACHD patient engagement skills. These aims will create foundational knowledge for future studies to
determine effectiveness of a mHealth based intervention to support ACHD patient engagement and ensure
ACHD specialist visit. Candidate is an ACHD cardiologist and health services researcher at UCSF. The
candidate, her mentors and her scientific advisors have developed a comprehensive career development plan
that includes training in mHealth-based behavioral interventions, qualitative methods, and clinical trials. With
strong institutional commitment, the candidate is well-positioned to attain research independence.

Grant Number: 5K23HL151866-04
NIH Institute/Center: NIH
Principal Investigator: Anushree Agarwal