Abstract
BackgroundQuality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. 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.AimTo explore individual quality of life of people with ALS and their informal caregivers over time.MethodsOver three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases.ResultsIndividual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. 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.ConclusionThe 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. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of self-defined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.
Highlights
Amyotrophic Lateral Sclerosis (ALS) known as Motor neurone disease (MND) is a progressive and terminal neurodegenerative illness
Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point
The ascertainment of selfdefined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care
Summary
Amyotrophic Lateral Sclerosis (ALS) known as Motor neurone disease (MND) is a progressive and terminal neurodegenerative illness. People with ALS/MND are primarily looked after in their own home by informal caregivers, usually family or friends. Informal caregivers are an important component in the ALS care provision system, enabling patients to remain at home rather than going to a care facility [3]. The ascertainment of self-defined contributions to life quality mean health care professionals will be in a better position to provide person-centred care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. 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
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