title: Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival.
abstract: Few studies in amyotrophic lateral sclerosis (ALS) have profiled disease-specific features of the condition in conjunction with assessment of caregivers' burden, distress, quality of life, and investigated patient survival. Eighty-four ALS patients and their primary caregivers were enrolled. Patients completed ALS-specific measures of physical and cognitive function, while caregivers completed measures of anxiety, depression, caregiver burden, and quality of life. Patient-caregiver dyads were interviewed about their health-service utilisation. Survival data were obtained through the Irish register for ALS. Participants were dichotomised into low/high groups according to the severity of self-reported caregiver burden, based on statistically derived cut-off scores. High-burdened caregivers (n = 43) did not significantly differ from low-burdened caregivers (n = 41) with respect to disease-specific characteristics, i.e., ALSFRS-R, bulbar- or spinal-onset ALS, disease duration, or survival data. However, significant differences were reported on subjective measures of anxiety (p < 0.000), depression (p < 0.001), distress (p < 0.000), and quality of life (p < 0.000). These data demonstrate the limited impact of ALS patient-related variables, i.e., ALSFRS-R and onset, on caregiver burden in ALS, and identify the importance of the psychological composition of caregivers. This study suggests that the subjective experience of individual caregivers is an important factor influencing the severity of experienced caregiver burden.
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland. burket2@tcd.ie.|Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Dublin 2, Ireland. burket2@tcd.ie.
authors.forename: Tom
authors.initials: T
authors.lastname: Burke
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.
authors.forename: Miriam
authors.initials: M
authors.lastname: Galvin
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.|Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Dublin 2, Ireland.
authors.forename: Marta
authors.initials: M
authors.lastname: Pinto-Grau
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.|Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Dublin 2, Ireland.
authors.forename: Katie
authors.initials: K
authors.lastname: Lonergan
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.
authors.forename: Caoifa
authors.initials: C
authors.lastname: Madden
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.
authors.forename: Iain
authors.initials: I
authors.lastname: Mays
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.|Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Dublin 2, Ireland.
authors.forename: Sile
authors.initials: S
authors.lastname: Carney
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.|Department of Neurology, Beaumont Hospital, Dublin 9, Ireland.
authors.forename: Orla
authors.initials: O
authors.lastname: Hardiman
authors.affiliation: Department of Psychology, Lower Ground Floor, Beaumont Hospital, Beaumont Road, Dublin 9, Ireland.|Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Dublin 2, Ireland.
authors.forename: Niall
authors.initials: N
authors.lastname: Pender
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000401:mortality / Q000451:nursing / Q000523:psychology; D017028:Caregivers / Q000191:economics* / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D006801:Humans; D007494:Ireland; D053208:Kaplan-Meier Estimate; D008297:Male; D008875:Middle Aged; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report; D012727:Sex Characteristics; D012728:Sex Chromatin
keywords: ALS; Caregiver burden; Quality of life; Survival