Coping in people with amyotrophic lateral sclerosis and motor neuron disease: Systematic review

Abstract

Aims and objectives: To systematically review previous studies on the variables associated with coping strategies in people with amyotrophic lateral sclerosis and motor neuron disease (ALS/MND), such as demographics, clinical features and patient-reported outcomes.

Background: Coping strategies are important factors for adjustment and quality of life (QOL) in patients with long-term conditions, and this topic in people with ALS/MND has not yet been the subject of a systematic review.

Design: A systematic review was performed based on the PRISMA checklist.

Methods: Electronic databases, including CINAHL, MEDLINE and EMBASE, were systemically searched from their inception to December 2019 for articles meeting the following inclusion criteria: (1) written in English, (2) published in peer-reviewed journals, (3) included subjects with ALS/MND and (4) used quantitative measurements of coping strategies in people with ALS/MND.

Results: Twenty-one articles were included. Significant relationships between participants' demographics (age and sex) and any coping strategy aspect were shown in six studies. Eight studies found significant relationships between clinical characteristics (disease duration and physical functional status) and coping strategies, and ten studies reported coping strategies that were associated with patients' QOL and mental health outcomes.

Conclusion: Younger people used relatively more problem-focused, emotion-focused and social support coping strategies, and women used relatively more social support coping strategies. Problem-focused coping was generally related to better QOL and mental health, and emotion-focused coping was generally related to less depression.

Relevance to clinical practice: As the pattern of coping strategies is related to demographic and clinical characteristics, this study could be used to inform the provision of patient-centred nursing in clinical care. Coping patterns are related to mental health and QOL; thus, in clinical care, it is recommended that people with ALS be encouraged to develop skills that enable them to cope more effectively and that their coping strategies be assessed.

Keywords: amyotrophic lateral sclerosis; anxiety; coping skills; depression; motor neuron disease; quality of life.