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.

Caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross‐sectional study

“…The finding that mental health was more affected than physical health confirms others’ results (Jenkinson et al., ; Olsson Ozanne et al., ; Peters et al., ). We found, as previously reported (Burke et al., ; Chio, Gauthier, Calvo, Ghiglione, & Mutani, ; Galvin et al., ; Peters et al., ), associations between HRQL and caregiver burden. Importantly, positive aspects of caregiving were related to an increase in SF‐36 MCS scores, that is better HRQL.…”

“…Older age was in our study associated with better mental health, a finding in line with (Roach et al, 2009). Like others (Burke et al, 2017;Lo Coco et al, 2005;Olsson Ozanne et al, 2011), we found no association between disease severity in patients with ALS and caregivers' HRQL. Anxiety and/or depression in patients was, however, associated with decreased HRQL.…”

“…This indicates the importance of providing sufficient support and services to patients with ALS and their caregivers. Furthermore, to involve informal caregivers in care planning and to value their caregiving experience, as this may reduce their strain and burden, and improve their health (Bergin & Mockford, 2016;Burke et al, 2017;Olsson Ozanne et al, 2012;Peters et al, 2012). (Jenkinson et al, 2000;Olsson Ozanne et al, 2011;Peters et al, 2012).…”

“…Further, despite the robust measures and statistical methodologies, our models explained between 19%-54% of the variance, meaning that there are some unidentified associated factors. These factors might be related to informal caregivers, for example anxiety and depression (Burke et al, 2017;Vignola et al, 2008), problem-solving skills (Murphy, Felgoise, Walsh, & Simmons, 2009) and lack of social support (Peters et al, 2012); or to patients with ALS, for example cognitive and behavioural impairments (Chio et al, 2010). Further, the quality of the relationship between caregivers and patients might be another important aspect (Cipolletta et al, 2018;Galvin et al, 2018).…”

“…The challenging progressive course of ALS results in a broad and ever-changing spectrum of care needs, and the caregiver burden upon informal caregivers is substantial (Bruletti et al, 2015;Burke et al, 2017;Galvin et al, 2016). Informal caregiving can, however, be regarded as a multidimensional construct (Nijboer et al, 2000) including both positive and negative experience.…”