Efficient Measurement of Multiple Ventricular Assist Device Patient-reported Outcomes: Creation of a 20-item Profile from the MCS A-QOL Study

Background Patient-reported outcome (PRO) measures of distinct concepts are often put together into patient profile assessments. When brief, profile assessments can decrease respondent burden and increase measure completion rates. In this report, we describe creation of five self-reported 4-item short forms and the MCS A-QOL 20-item profile to assess PROs specific to adjustment and health-related quality of life (HRQOL) among patients who undergo left ventricular assist device (LVAD) implantation. Methods Using a cross-sectional sample of patients (n=620) who underwent LVAD implantation at 12 U.S. sites or participated in the MyLVAD.com support group, we created five 4-item short forms: Satisfaction with Treatment, VAD Team Communication, Being Bothered by VAD Self-care and Limitations, Self-efficacy Regarding VAD self-care, and Stigma, which we combined into a 20-item Profile. Analyses included inter-correlations among measures, Cronbach’s alpha (i.e., internal consistency reliability)/score-level-specific reliability, and construct validity. Results The 620 patients were mean age=57 years, 78% male, 70% white, and 56% on destination therapy LVADs. Inter-correlations among the five 4-item measures were low to moderate (<0.50), indicating they are associated yet largely distinct, and correlations with calibrated measures and 6-item short forms were >0.76, indicating their ability to reflect full-item bank scores. Internal consistency reliability for the five 4-item short forms ranged from acceptable (≥0.70) to good (≥0.80). Construct validity was demonstrated for these measures. Conclusions Our five 4-item short forms are reliable and valid and may be used individually or together as a 20-item Profile to assess adjustment and HRQOL in patients who undergo LVAD implantation.