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Gepubliceerd in:

08-03-2022

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

Auteurs: Allison J. Carroll, Elizabeth A. Hahn, Kathleen L. Grady

Gepubliceerd in: Quality of Life Research | Uitgave 8/2022

Abstract

Purpose

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).

Methods

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.

Results

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.

Conclusions

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.

Trial registration

NCT03044535 (accessible at https://clinicaltrials.gov/ct2/show/NCT03044535), registered February 7, 2017.

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Titel: 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
Auteurs: Allison J. Carroll
Elizabeth A. Hahn
Kathleen L. Grady
Publicatiedatum: 08-03-2022
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 8/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-022-03111-4

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Abstract

Purpose

Methods

Results

Conclusions

Trial registration

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