title: Caregivers and Left Ventricular Assist Devices as a Destination, Not a Journey.
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.
  
  
  CONCLUSIONS
  Support interventions for caregivers of patients with LVAD-DT should address the psychologic and social aspects that lead to poor QOL.
authors.affiliation: Cardiovascular Division and Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA.
authors.forename: James N
authors.initials: JN
authors.lastname: Kirkpatrick
authors.affiliation: Department of Family Medicine and Community Health, Mixed Methodology Research Laboratory, University of Pennsylvania, Philadelphia, PA.
authors.forename: Katherine
authors.initials: K
authors.lastname: Kellom
authors.affiliation: Cardiovascular Medicine, Yale University School of Medicine, New Haven, CT.
authors.forename: Sarah C
authors.initials: SC
authors.lastname: Hull
authors.affiliation: Department of Family Medicine and Community Health, Mixed Methodology Research Laboratory, University of Pennsylvania, Philadelphia, PA.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Henderson
authors.affiliation: Cardiovascular Division, University of Pennsylvania, Philadelphia, PA.
authors.forename: Jasmeet
authors.initials: J
authors.lastname: Singh
authors.affiliation: Advocate Christ Medical Center, Heart and Vascular Institute, Oak Lawn, IL.
authors.forename: Laura A
authors.initials: LA
authors.lastname: Coyle
authors.affiliation: Division of Cardiology, Section of Heart Failure and Transplantation, Cleveland Clinic, Cleveland, OH.
authors.forename: Maria
authors.initials: M
authors.lastname: Mountis
authors.affiliation: Advanced Cardiac Transplant Center and Mechanical Circulatory Support Programs, Thomas Jefferson University Hospital, Philadelphia, PA.
authors.forename: Elizabeth D
authors.initials: ED
authors.lastname: Shore
authors.affiliation: Department of Psychiatry, Drexel University College of Medicine, Philadelphia, PA.
authors.forename: Ralph
authors.initials: R
authors.lastname: Petrucci
authors.affiliation: Department of Family Medicine, Mixed Methodology Research Laboratory, University of Pennsylvania, Philadelphia, PA.
authors.forename: Peter F
authors.initials: PF
authors.lastname: Cronholm
authors.affiliation: Department of Family Medicine, Mixed Methodology Research Laboratory, University of Pennsylvania, Philadelphia, PA.
authors.forename: Frances K
authors.initials: FK
authors.lastname: Barg
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology* / Q000639:trends; D005260:Female; D006333:Heart Failure / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D006352:Heart Ventricles; D006353:Heart-Assist Devices / Q000523:psychology* / Q000639:trends; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: LVAD; caregivers; heart failure; quality of life