Author ORCID Identifier

Date of Award

Spring 5-13-2019

Degree Type


Degree Name

Doctor of Nursing Practice (DNP)



First Advisor

Lee Eades



Purpose: As patients with adult congenital heart disease (ACHD) age, they encounter age associated comorbidities, congruous with the general population. At their ACHD appointments, they present with untreated medical problems associated with asthma, diabetes, contraception, and respiratory infections. This project seeks to identify barriers associated with establishing care in patient-centered medical home (PCMH); understand current primary care utilization and identify patient perceptions contributing to lack of follow up in primary care.

Methods: An 84-question validated survey completed electronically by patients (> 18 years) presenting at the outpatient congenital cardiac clinic between September 12, 2019 to November 15, 2019 was used to evaluate barriers to care, patient perceptions on healthcare and healthcare utilization patterns.

Results: Survey responses filled out by 30 participants with a mean age 44 ±16.9 years were used to evaluate barriers to care. 80% (n=24) were not aware of a PCMH model; but 77% (n=23) were willing to drive 1-50 miles to access a primary care physician. All participants had access to PCMH within 20 miles of their residence. In a multivariate model, BCQ scores were not statistically significant when accounting for insurance status, CHD severity, or having regular primary care. 93% felt their ACHD cardiologist would inform them if they needed to see someone else. 43% expressed distrust for providers not trained in their heart condition. The largest barriers to care were taking time off work (24%), healthcare costs (23%), getting a thorough exam (23%), meeting the needs of other family members (20%), reaching the office by phone (17%), appointment lag time (17%), long waiting room time (17%), lack of communication within the healthcare system (17%), and getting questions answered (17%).

Conclusions: This project illustrated a lack of awareness of PCMHs in ACHD patients. Health insurance status, having a primary care provider, ethnicity and education level did not have a statistically significant effect on BCQ scores. However, responses to the survey yielded valuable information for improving care for this population.


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