James N Kirkpatrick1, Katherine Kellom2, Sarah C Hull3, Rebecca Henderson2, Jasmeet Singh4, Laura A Coyle5, Maria Mountis6, Elizabeth D Shore7, Ralph Petrucci8, Peter F Cronholm9, Frances K Barg9. 1. Cardiovascular Division and Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA. 2. Department of Family Medicine and Community Health, Mixed Methodology Research Laboratory, University of Pennsylvania, Philadelphia, PA. 3. Cardiovascular Medicine, Yale University School of Medicine, New Haven, CT. 4. Cardiovascular Division, University of Pennsylvania, Philadelphia, PA. 5. Advocate Christ Medical Center, Heart and Vascular Institute, Oak Lawn, IL. 6. Division of Cardiology, Section of Heart Failure and Transplantation, Cleveland Clinic, Cleveland, OH. 7. Advanced Cardiac Transplant Center and Mechanical Circulatory Support Programs, Thomas Jefferson University Hospital, Philadelphia, PA. 8. Department of Psychiatry, Drexel University College of Medicine, Philadelphia, PA. 9. Department of Family Medicine, Mixed Methodology Research Laboratory, University of Pennsylvania, Philadelphia, PA.
Abstract
BACKGROUND: The quality of life (QOL) of caregivers of patients with LVAD-DT (Left Ventricular Assist Device as Destination Therapy) has not been well explored. METHODS: We 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. RESULTS: The 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. CONCLUSION: Support interventions for caregivers of patients with LVAD-DT should address the psychologic and social aspects that lead to poor QOL.
BACKGROUND: The quality of life (QOL) of caregivers of patients with LVAD-DT (Left Ventricular Assist Device as Destination Therapy) has not been well explored. METHODS: We 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. RESULTS: The 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. CONCLUSION: Support interventions for caregivers of patients with LVAD-DT should address the psychologic and social aspects that lead to poor QOL.
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