Department of Kinesiology and Physical Education, McGill University, Montreal, QC, Canada.
McGill Research Centre for Physical Activity and Health, Faculty of Education, McGill University, Montreal, QC, Canada.
COPD. 2021 Apr;18(2):133-146. doi: 10.1080/15412555.2021.1901271. Epub 2021 Mar 29.
This study describes the research and healthcare priorities of individuals living with COPD. On an online survey, individuals living with COPD assigned a percentage of funding to 22 research priorities and a percentage of time spent communicating with a healthcare provider to 24 healthcare priorities, indicating which topics were most important. For each research and healthcare priority, we examined the selection frequency of the priority and used chi-square analyses to examine differences in priority selection by quartiles of airflow obstruction (percent predicted forced expiratory volume in 1-sec (FEV%predicted)) and breathlessness burden and exacerbation risk. Based on participants' responses ( = 148, 47% women; Mean ± Standard Deviation age = 68 ± 9 yrs) relief of breathlessness was the most often selected research (76% of respondents) and healthcare priority (61% of respondents). It was selected most often, regardless of disease severity or breathlessness burden and exacerbation risk. We found differences for disease severity and breathlessness burden and exacerbation risk in some research priorities (e.g., to improve the maximal amount of exercise of adults living with COPD in and out of the home (χ = 9.97, Cramer's =.28) and healthcare priorities (e.g., increase your ability to exercise (χ = 9.72, Cramer's =.27)). This study provides empirical evidence that relief of breathlessness is a top research and healthcare priority for individuals living with COPD. Future healthcare and research activities should align with the priorities of individuals with COPD to improve their care by minimizing disease/symptom burden and optimizing health-related quality of life.
这项研究描述了慢性阻塞性肺疾病（COPD）患者的研究和医疗保健重点。在一项在线调查中，COPD 患者将资金的百分比分配给 22 项研究重点，将与医疗保健提供者沟通的时间百分比分配给 24 项医疗保健重点，以确定哪些主题最重要。对于每个研究和医疗保健重点，我们检查了优先事项的选择频率，并使用卡方分析检查了按气流阻塞（预计 1 秒用力呼气量百分比（FEV%predicted）的四分位数）和呼吸困难负担和加重风险划分的优先事项选择的差异。根据参与者的回答（n=148，47%为女性；平均年龄±标准偏差=68±9 岁），呼吸困难缓解是最常选择的研究（76%的受访者）和医疗保健重点（61%的受访者）。无论疾病严重程度或呼吸困难负担和加重风险如何，它都是最常选择的。我们发现一些研究重点（例如，提高慢性阻塞性肺疾病患者在家庭内外的最大运动量（χ=9.97，Cramer's =.28）和医疗保健重点（例如，提高你的运动能力（χ=9.72，Cramer's =.27））存在疾病严重程度和呼吸困难负担和加重风险的差异。这项研究提供了实证证据，表明缓解呼吸困难是 COPD 患者的首要研究和医疗保健重点。未来的医疗保健和研究活动应与 COPD 患者的重点保持一致，通过最大限度地减少疾病/症状负担和优化健康相关生活质量来改善他们的护理。
