TY - JOUR
T1 - 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
AU - Carroll, Allison J.
AU - Hahn, Elizabeth A.
AU - Grady, Kathleen L.
N1 - Funding Information:
This work was supported by the National Heart, Lung, and Blood Institute (Grant No. 1R01HL130502-01, co-PIs Grady KL & Hahn EA). We thank Katy Wortman, Peter Cummings, and Sarah Buono for their assistance with data management and quality assurance.
Publisher Copyright:
© 2022, The Author(s), under exclusive licence to Springer Nature Switzerland AG.
PY - 2022/8
Y1 - 2022/8
N2 - 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.
AB - 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.
KW - Heart failure
KW - Mechanical circulatory support
KW - Patient-reported outcomes
KW - Qualitative research
KW - Research experience
UR - http://www.scopus.com/inward/record.url?scp=85125897350&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85125897350&partnerID=8YFLogxK
U2 - 10.1007/s11136-022-03111-4
DO - 10.1007/s11136-022-03111-4
M3 - Article
C2 - 35258804
AN - SCOPUS:85125897350
SN - 0962-9343
VL - 31
SP - 2457
EP - 2470
JO - Quality of Life Research
JF - Quality of Life Research
IS - 8
ER -