C55 Individual quality of life among spousal ALS patient-caregiver dyads



Session 5B Carer and family support

Orla Hardiman

Background: Quality of life is a basic goal of health and social care. The majority of people with ALS are cared for at home by family caregivers. People who experience illness and those who care for them exist in a relational context and a personal one. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment.

Objectives: To explore individual quality of life (IQoL) of people with ALS and their informal caregivers over the illness trajectory.

Methods: Data were collected during semi-structured home interviews by researchers attached to a multidisciplinary clinic (IM, MG). The interviews were conducted with the patient and caregiver separately, at baseline and on two further occasions at 4–6 month intervals from 2013–2015. Over the three interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress (HADS), caregiver burden (ZBI), and individual quality of life (SEIQol-DW). Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases.

Results: Individual Quality of Life (SIS) was high for patients and caregivers across the interviews series. However it was higher among patients than for their care partners at each interview time point. Differences in SIS scores were not statistically significant according to patient cognitive and behavioural status. Family, hobbies and social activities were the main self-defined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased.

Discussion and conclusions: Experiences of the person with ALS and his/her informal caregiver represent an important source of information on the lived experience of the condition. The findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. The factors remain consistent but may change in composition and importance relative to each other along the disease trajectory. As an integrated outcome measure can IQoL may facilitate conversations between health care providers, patients and families, be used to inform interventions and contribute to decision support mechanisms.


Source: Abstract Book symposium Perth