Adult congenital heart disease physical activity recommendation form: a feasibility study

Adults with Congenital Heart Disease (ACHD) follow the same physical inactivity patterns as the general population. It is well known that physical inactivity is a risk factor for cardiovascular disease, and even more significant in the ACHD population. Health fears and misconceptions are common barriers to physical activity despite evidence supporting safety and efficacy of many activities for ACHD patients. Feasibility Study with a convenience sample of 65 participants. The participants represented more moderate and complex diagnosis categorization. Participants completed the Stanford Brief Activity Survey (SBAS) and the Stanford Patient Education Research Questionnaire for Chronic Disease during enrollment. Participants received a Physical Activity Recommendation Form (PARF) with written instructions for utilization of the form at their next routine ACHD Provider clinic visit. Following use of the PARF, study participants completed a second SBAS and a PARF Utilization Satisfaction Survey, both returned in a pre-addressed envelope via regular mail to the investigators. Baseline data central tendency analysis determined 33% were not active, 43% were insufficiently active, and 24% were sufficiently active to obtain activity related health benefits. The majority of the lifestyle scores for all four indicators were in the (8–10 range) indicative of participant confidence in managing symptoms impacting activity of daily living. Much less confidence (3–5 range) in managing symptoms of fatigue, pain, and emotional distress. 80% of the PARF Utilization Surveys reported that use gave them more confidence in increasing activity level and less anxiety about exercise. 90% recommended PARF use for other ACHD patients. 50% reported an increase in physical activity following use of the PARF and study participation. The ACHD Physical Activity Advocacy Study raised awareness and increased confidence in discussing physical activity with specialty ACHD healthcare providers for the ACHA study participants. Perceived benefit from the utilization of the PARF was paramount, but several interesting results related to activity and lifestyle were also demonstrated: only 24% were identified as sufficiently active and less than half expressed confidence in managing anxiety. Therefore, more research in this population is needed to better define the relationship between anxiety and activity levels to determine appropriate interventions for patient empowerment. Trial registration, retrospective/pending, exempt low risk study per IRB approval and not indicated.