Giri Paresh C, Stevens Gizelle J, Merrill-Henry Jeanette, Oyoyo Udochukwu, Balasubramanian Vijay P
Pulmonary and Critical Care Department, Loma Linda University Medical Center, Loma Linda, CA, USA.
Respiratory Care Department, Loma Linda University Medical Center, Loma Linda, CA, USA.
Pulm Circ. 2021 May 17;11(2):20458940211013258. doi: 10.1177/20458940211013258. eCollection 2021 Apr-Jun.
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.
支持小组参与已被证明在许多慢性疾病中有效。将支持小组纳入肺动脉高压护理及其对生活质量、身心健康影响的证据有限。我们试图评估支持小组参与对被诊断为肺动脉高压的患者及其护理人员生活质量的影响。采用emPHasis - 10问卷（一种经验证可用于评估肺动脉高压生活质量的工具）来评估支持小组参与的效果。还检查了其他人口统计学和与健康相关的质量指标。结果显示，165名受试者参与了该研究；122名（74.4%）为肺动脉高压患者，41名（25.0%）为其护理人员，2名（0.02%）未作回应。该队列主要为女性（n = 128，78%）、白种人（n = 10，61%），自我报告的主要肺动脉高压分类为世界卫生组织第1组（n = 85，51.8%），自我报告的纽约心脏协会功能分级为II级和III级（n = 43，57.3%）。大多数参与者（n = 118，71.5%）参加了支持小组，其中大多数（n = 107，90.6%）表示这对他们有帮助。通过emPHasis - 10评分评估，参与支持小组与否在生活质量方面无差异（中位数评分30对32，P = 0.387）。在更好地了解病情（包括右心导管检查等程序）、药物依从性和自我护理信心方面有自我报告的改善（P < 0.05）。使用多因素逻辑回归分析，整个队列中与emPHasis - 10评分独立相关的基线变量包括对纽约心脏协会功能分级的了解（比值比：1.919，95%置信区间：1.004 - 3.67，P = 0.04）以及前往看肺动脉高压医生的路程更远（比值比：1.391，95%置信区间：0.998 - 1.94，P = 0.05）。总之，通过emPHasis - 10评分评估，支持小组参与并未改善生活质量，但改善了其他有意义的与健康相关的质量结果。
