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Health and Quality of Life Outcomes

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Open Access 01-12-2020 | Amyotrophic Lateral Sclerosis | Research

Individual quality of life in spousal ALS patient-caregiver dyads

Authors: Miriam Galvin, Tommy Gavin, Iain Mays, Mark Heverin, Orla Hardiman

Published in: Health and Quality of Life Outcomes | Issue 1/2020

Abstract

Background

Quality 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.

Aim

To explore individual quality of life of people with ALS and their informal caregivers over time.

Methods

Over 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.

Results

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. 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.

Conclusion

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. 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.

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Title: Individual quality of life in spousal ALS patient-caregiver dyads
Authors: Miriam Galvin
Tommy Gavin
Iain Mays
Mark Heverin
Orla Hardiman
Publication date: 01-12-2020
Publisher: BioMed Central
Keyword: Amyotrophic Lateral Sclerosis
Published in: Health and Quality of Life Outcomes / Issue 1/2020
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/s12955-020-01551-5

At a glance: The STEP trials

Springer Medicine

Individual quality of life in spousal ALS patient-caregiver dyads

Abstract

Background

Aim

Methods

Results

Conclusion

At a glance: The STEP trials

Springer Medicine

Abstract

Background

Aim

Methods

Results

Conclusion

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