Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey.

Support group participation has been shown to be effective in many chronic medical conditions. The evidence for integrating support group into pulmonary hypertension care and its effect on quality of life, physical and psychological well-being is limited. We sought to assess the effect of support group participation on quality of life in patients diagnosed with pulmonary hypertension and their caregivers. The emPHasis-10 questionnaire (a tool validated for quality of life assessment in pulmonary hypertension) was used to evaluate the effect of support group participation. Additional demographic and health-related quality measures were examined. Results showed that 165 subjects were enrolled in the study; 122 (74.4%) were patients with pulmonary hypertension, 41 (25.0%) were their caregivers, and 2 (0.02%) did not respond. The cohort was predominantly female ( = 128, 78%), Caucasian ( = 10, 61%), and the principal self-reported classification of pulmonary hypertension was World Health Organization Group 1 ( = 85, 51.8%) and the self-reported New York Heart Association Functional Class was II and III ( = 43, 57.3%). Most participants ( = 118, 71.5%) attended support groups and of them, a majority ( = 107, 90.6%) stated it helped them. There was no difference in quality of life as assessed by emPHasis-10 scores with support group participation (median score 30 vs 32,  = 0.387). There was self-reported improvement in understanding condition better including procedures such as right heart catheterization, medication compliance, and confidence in self-care ( < 0.05). Using multivariate logistic regression, baseline variables that were independently associated with emPHasis-10 scores for the entire cohort included knowledge of New York Heart Association Functional Class (odds ratio: 1.919, 95% CI: 1.004-3.67,  = 0.04) and greater distance traveled to visit pulmonary hypertension physician (odds ratio: 1.391, 95% CI: 0.998--1.94,  = 0.05). In conclusion, support group participation does not improve quality of life as assessed by emPHasis-10 scores but improves other meaningful health-related quality outcomes.