Research engagement and experiences of patients pre- and post-implant of a left ventricular assist device from the mechanical circulatory support measures of adjustment and quality of life (MCS A-QOL) study.
Research engagement and experiences of patients pre- and post-implant of a left ventricular assist device from the mechanical circulatory support measures of adjustment and quality of life (MCS A-QOL) study.
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DOI：
10.1007/s11136-022-03111-4
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发表时间：
2022-08
影响因子：
3.5
通讯作者：
Grady, Kathleen L.
中科院分区：
文献类型：
--
作者：
Carroll, Allison J.;Hahn, Elizabeth A.;Grady, Kathleen L.
关键词：
接受机械循环支持（MCS）的成年人面临独特的挑战（例如，左心室辅助装置[LVAD]相关自我护理、不良事件）至研究入组、参与和完成。本研究的目的是了解有资格参加健康相关生活质量（HRQOL）研究的MCS成人的经历。在对机械循环支持数据的二次分析中：调整措施和生活质量研究，我们使用混合方法评价准备接受或目前生活在MCS植入物中的成人的研究参与和经验。首先，我们评估了研究参与的级联。第二，我们评估了研究经验，使用结构化访谈本研究开发。在1011名参与者中，86.7%的人参加了这项研究，12.7%的人拒绝了，0.6%的人不合格。在入组的877名受试者中，272名为植入前受试者（其中88%完成了评估;“应答者”），605名为植入后受试者（其中74%完成了评估）。只有14%的受访者表示难以完成调查问卷，54%的受访者此前曾使用iPad完成调查问卷，62%的受访者表示他们的体验“与预期一致”。受访者定性地描述了积极的（例如，研究价值）和负面（例如，太多的时间）研究经验，完成问卷的困难（例如，在线平台、卫生知识普及问题），并为问卷调查和发放提供了建议。参与者喜欢参与以MCS为重点的HRQOL研究，并对改进问卷有独特的观点。重要的是要尽量减少参与的负担，关键是要灵活地满足参与者对研究参与的偏好。NCT 03044535（可访问https：//clinicaltrials.gov/ct2/show/NCT 03044535），于2017年2月7日注册。
Adults living with mechanical circulatory support (MCS) present with unique challenges (e.g., left ventricular assist device [LVAD]-related self-care, adverse events) to research study enrollment, engagement, and completion. The purpose of this study was to understand the experiences of adults with MCS who were eligible for and enrolled in a study of health-related quality of life (HRQOL). In a secondary analysis of data from the Mechanical Circulatory Support: Measures of Adjustment and Quality of Life study, we used a mixed-methods approach to evaluate research engagement and experiences among adults preparing to undergo or currently living with MCS implant. First, we assessed the cascade of study engagement. Second, we assessed research experiences using a structured interview developed for this study. Of 1011 participants approached for the study, 86.7% enrolled, 12.7% declined, and 0.6% were ineligible. Of 877 participants enrolled, 272 were pre-implant (of whom 88% completed assessments; “respondents”) and 605 were post-implant (of whom 74% completed assessments). Only 14% of respondents reported difficulty completing the questionnaires, 54% had previously used an iPad to complete questionnaires, and 62% reported that their experience was “as expected.” Respondents qualitatively described both positive (e.g., value of research) and negative (e.g., too much time) research experiences, difficulties completing questionnaires (e.g., online platform, health literacy issues), and provided recommendations for the questionnaires and delivery. Participants enjoyed participating in HRQOL research focused on MCS and had unique perspectives for improving the questionnaires. It is important to minimize the burden of participation and critical to be flexible to meet participant preferences for research engagement. NCT03044535 (accessible at https://clinicaltrials.gov/ct2/show/NCT03044535), registered February 7, 2017.
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