Caregivers and Left Ventricular Assist Devices as a Destination, Not a Journey

• We explored the burdens and quality of life (QOL) of caregivers of patients with LVAD-DT.
• We used a concurrent mixed methods design in a multicenter study.
• Forty-two caregivers were interviewed from 6 LVAD-DT programs.
• The psychologic subscale had the lowest QOL score, followed by the social subscale.
• Psychologic and social themes predominated in the qualitative interviews.

BackgroundThe quality of life (QOL) of caregivers of patients with LVAD-DT (Left Ventricular Assist Device as Destination Therapy) has not been well explored.MethodsWe used a concurrent mixed methods design. Caregivers (n = 42; average 60 years old, 82% female, 75% white) of patients (n = 39; average 68.3 years old, 83% male, 90% white) and providers (n = 27) from 6 LVAD-DT programs were recruited. We used the City of Hope Quality of Life Family Caregiver instrument, modified for LVAD-DT. Lower scores indicate poorer QOL. We analyzed open-ended questions with the use of Nvivo 10.0, using a modified grounded theory approach.ResultsThe Psychologic subscale had the lowest average QOL score, followed by Social, Spiritual, and then Physical subscales. The composite mean average QOL score across the subscales was highest in caregivers <40 years of age and ≥70 years of age. There was a nonsignificant trend toward better QOL in male caregivers (P = .06). We sorted QOL items into tertiles based on the percentage of responses <5 (10-point Likert scale). Scores <5 in the 2nd tertile (items from Social and Spiritual subscales) were reported by many fewer respondents than the 1st tertile (items from the Psychologic subscale). In the 3rd tertile, <10% of respondents scored <5 on 15 of the items. In qualitative interviews psychologic and social themes predominated in discussing requisites for competent caregivers, stress in pre-implantation decision making, lack of psychologic preparation, impact on freedom/independence, daily worry about pump performance, and value of psychologic and social support.ConclusionSupport interventions for caregivers of patients with LVAD-DT should address the psychologic and social aspects that lead to poor QOL.