A prospective survey sent to adults with congenital heart disease and physicians who treat them identified six symptoms that were relevant to most patients.
The symptoms were trouble sleeping; fatigue; low energy levels; anxiety or stress about health; depression, sadness or feelings of helplessness or hopelessness; and cost of medical care.
Lead researcher Ari M. Cedars, MD, of Baylor University Medical Center in Dallas, and colleagues published their results online in Circulation: Cardiovascular Quality and Outcomes on March 8.
“A critical goal in optimizing care for the growing population of [adults with congenital heart disease] patients is to be able to quantify and monitor the symptoms among patients with disease,” they wrote. “Before developing a formal [patient-reported outcome], however, it is critically important to elicit the most important symptoms to assess…Unexpectedly, the symptoms of greatest significance to [adults with congenital heart disease] patients are largely similar and independent of underlying cardiac diagnosis.”
The researchers mentioned more than 1.2 million adults in the U.S. have congenital heart disease, which has increased in the past 20 years and far exceeds the incidence among children.
For this analysis, they developed a 39-item survey with input from physicians and patients. They approached physicians who treated adults with congenital heart disease and were members of the Alliance for Adult Research in Congenital Cardiology and asked them to provide a list of common symptoms. A total of six physicians from different institutions agreed to participate and identified 39 symptoms.
The researchers used those 39 symptoms to construct a survey that included the following demographic variables: sex, age, offspring, long-term relationship status, presence of an implantable cardiac defibrillator and primary cardiac diagnosis. Patients were asked to rank the importance and frequency with which they experienced each symptom.
The researchers noted that 100 participants completed the survey at the Adult Congenital Heart Association annual meeting and 24 participants completed the survey in the Center for Adults with Congenital Heart Disease at Washington University School of Medicine.
An additional 40 adults with congenital heart disease from Massachusetts General Hospital completed the survey to confirm the results.
The mean age of participants was 42.7 years old, and 67 percent were female. In addition, 21 percent of participants had lesions of low complexity and 43 percent had lesions of moderate complexity.
Significant differences were found in only six of the 39 symptoms, according to the researchers.
They added that patients with lesions of great complexity had a greater impact of heart disease-related symptoms such as bluish or dusky colored skin, having to go to the hospital or emergency room, concerns with sexual function, feeling mentally slower than other people and feeling they are different than other people. In addition, uncertainty about the future was the only significantly different symptom between patients with low and moderate complexity.
The researchers cited a few potential limitations of the study, including that most survey respondents attended the ACHA annual meeting and were likely to be more informed and more affluent compared with the general population. The respondents agreed to participate, as well, which may have skewed the findings. Further, participants who completed the survey at the ACHA annual meeting self-reported their anatomic diagnosis.
“Patients generally experience similar symptoms regardless of underlying anatomy,” the researchers wrote. “Based on these findings, we think that a single [patient-reported outcome] can be developed for patients with [adult congenital heart disease]. In future work, we will employ focus groups and cognitive debriefing exercises with the goal of reducing the number of items and developing a [patient-reported outcome] with good content validity.”