Psychological interventions for people with motor neuron disease: a scoping review
Open accessAbstract
Objective Motor neuron disease (MND) is a rapidly progressive neurodegenerative condition with no known cure. MND can affect every aspect of a person’s life and has been associated with a wide range of psychological difficulties, which can occur from pre-diagnosis through to the condition’s later stages. However, very little research has been conducted on psychological interventions for people with MND (pwMND). This paper aimed to provide the first review specifically targeting psychological interventions in MND and offer potential directions for future research. Methods: A scoping review was carried out across five major databases (PubMed, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library) until 1st of March 2020. Results: From an initial return of 1278 citations, 10 papers were included in the review. These included three randomized controlled trials (RCTs), two quasi-experiments, three uncontrolled pretest–post-test designs, one single case study, and one qualitative secondary analysis. The existing studies focused on a limited number of psychological outcomes and did not take into account site of MND onset or level of depression/anxiety before intervention. Implications for clinical practice are discussed and suggestions for future research are provided. Conclusions: The literature on psychological interventions is still extremely sparse. Mindfulness-based stress reduction (MBSR) and cognitive behavioral therapy (CBT) based on the stress-coping model show promise in RCTs, but require further evaluation. The need for further development and evaluation of psychological interventions to improve the well-being of pwMND cannot be overstated, particularly as the struggle toward the discovery of an effective treatment for MND continues.
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There have been no adequately powered randomised controlled trials of psychological interventions for people with motor neuron disease, and none of ACT.
“There have been no adequately powered randomised controlled trials of psychological interventions for people with motor neuron disease, and none of ACT.”
From Acceptance and Commitment Therapy plus usual care for improving quality of life in people with motor neuron disease (COMMEND): a multicentre, parallel, randomised controlled trial in the UK (2024) · cites this paper as [8]
The Discussion (page unavailable) identifies three RCTs and describes the evidence base as mainly small and low powered, calling for larger, sufficiently powered studies. It does not establish that none of the three RCTs was adequately powered. Clinical implications and future directions (page unavailable) explicitly says ACT had not yet been evaluated in MND. (LLM, conf=0.82)
Experimental — accuracy not yet measuredThere is a paucity of adequately powered randomised controlled trials of psychological interventions for people with motor neuron disease, meaning there is little clear evidence-based guidance on what psychological support should be provided.
“However, a paucity of adequately powered randomised controlled trials means there is little clear evidence-based guidance on what psychological support should be provided.”
Previous systematic reviews of psychological interventions to reduce psychological distress and improve psychological wellbeing in plwMND have highlighted limited research of varying quality.
“Previous systematic reviews of psychological interventions to reduce psychological distress and improve psychological wellbeing in plwMND have highlighted limited research of varying quality [19, 20].”
From Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study (2023) · cites this paper as [20]
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Self-citation
- Authors
- Zarotti, N., Mayberry, E., Ovaska-Stafford, N., Eccles, F., & Simpson, J.
- Affiliations
- Lancaster University (GB)
- Sheffield Teaching Hospitals NHS Foundation Trust (GB)
- Oxleas NHS Foundation Trust (GB)
- Corresponding author
- Simpson, Jane
- Venue
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
- Publisher
- Informa UK Limited
- Published
- 2020-07-13
- Volume
- 22
- Issue
- 1-2
- Pages
- 1-11
- ISSN
- 2167-8421 (ISSN-L)
- 2167-9223
- OpenAlex
- W3037734521
- Cited by
- 36
- References
- 80
- Citations by year
- 2026: 4 · 2025: 7 · 2024: 9 · 2023: 6 · 2022: 6 · 2021: 2 · 2020: 2
- FWCI
- 0.45
- Type
- journal article
- Language
- en
- Open access
- green
- eprints.lancs.ac.uk
- Locations
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (publishedVersion)
- PubMed (publishedVersion)
- Lancaster EPrints (Lancaster University) (submittedVersion)
- UEA Digital Repository (University of East Anglia) (submittedVersion)
- Topics
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Social Sciences › Psychology › Clinical Psychology › Mindfulness and Compassion Interventions
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- motor neuron disease, psychological intervention, mindfulness-based stress reduction, cognitive behavioral therapy, stress and coping model, depression, anxiety, well-being, neurodegenerative diseases, amyotrophic lateral sclerosis
- MeSH terms
- Psychosocial Intervention, Adaptation, Psychological, Amyotrophic Lateral Sclerosis, Humans, Cognitive Behavioral Therapy, Motor Neuron Disease
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