Research Engagement and Experiences of Participants in the Mechanical Circulatory Support: Measures of Adjustment and Quality of Life (MCS A-QOL) Study

Purpose Adults with chronic diseases often have difficulty engaging in research due to disease burden. In a secondary analysis, we examined mechanical circulatory support (MCS) patients’ engagement in and experience of a health-related quality of life (HRQOL) research study (MCS A-QOL). Methods Pre- or post-MCS implant, demographic and clinical data were collected from participants, medical records, and INTERMACS. They completed HRQOL questionnaires and a semi-structured interview about their research experience. Logistic regression was used to identify patient characteristics associated with study engagement (i.e., questionnaire completion). Qualitative analysis of interview responses used a thematic approach. Results Of 1011 eligible adults at 12 U.S. sites, 877 (87%) enrolled (10/26/16 to 2/29/20) and 687 of enrolled (78%) engaged in the study (Table). Characteristics associated with study engagement were non-Hispanic White race (OR=1.69, 95%CI=1.17-2.46) and less severe pre-implant INTERMACS profile (OR=1.12, 95%CI=1.02-1.22). On interview, 30% of participants reported their experience was better than expected—they enjoyed completing questionnaires (“Questions were thought-provoking”), participating in research (“It was involved but straightforward”), and valuing research (“I am glad to help these studies however I can”). Among the few with worse-than-expected experiences (8%), they described lengthy questionnaires (“Many questions seemed repetitive”), technology difficulties (“the iPad timed out a couple of times”), or general dissatisfaction (“I am now sorry that I agreed to do it”). Conclusion MCS patients were open to engaging in research and enjoyed contributing to HRQOL research. Engagement was reduced by disease acuity and among racial/ethnic minorities. Research participation did not adversely burden MCS patients, which supports their participation in future psychosocial research studies.