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Experiences of people with multiple sclerosis and clinicians in using cognitive behavioural therapies for hidden symptoms: a systematic review and meta-aggregation

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Abstract

Purpose

Cognitive behavioural therapies (CBTs) are a standard of care for treatment of many ‘hidden symptoms’ in people with MS (PwMS), such as stress, depression, and fatigue. However, these interventions can vary widely in formatting and may not be tailored for PwMS. To optimize CBTs for MS, understanding the experiences of PwMS and clinicians is essential. This systematic review and meta-aggregation synthesizes existing qualitative data on stakeholder perspectives of CBTs for PwMS.

Methods

Systematic searches across five major electronic databases were conducted. Studies reporting qualitative data were identified. Two reviewers performed screening, quality assessment, data extraction, and certainty of evidence assessments. Meta-aggregation was performed as per the Joanna Briggs Institute approach, entailing qualitative data extraction, developing categories, and synthesizing overall findings.

Results

Twenty-eight studies were included in this review, comprising data from 653 PwMS and 47 clinicians. In the meta-aggregation, 122 qualitative results were extracted and grouped into nine categories. Categories were then combined into six synthesized findings: (1) setting the context–life with MS, (2) reasons for participating in CBTs, (3) acceptability of and experiences with participating in CBTs, (4) perceived benefits of CBTs, (5) perceived challenges with CBTs, and (6) suggestions to improve CBTs for PwMS.

Conclusions

A range of benefits including psychological, social, and lifestyle improvements were reported, but varied based on the design of the CBT intervention. Future CBT interventions should be tailored to participant needs, delivered in group settings, offer online options, and be delivered by a trained facilitator familiar with MS. Further exploration of the ideal CBT design for PwMS, as well as engagement with caregivers and clinicians treating MS, is warranted.

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Authors and Affiliations

  1. Toronto Rehabilitation Institute, University Health Network, Toronto, Canada

    Gregory Feng, Stephanie Posa, Tania Bruno, Mark Bayley, Sarah Munce & Robert Simpson

  2. Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada

    Ashvene Sureshkumar

  3. Forest Hill Centre for Cognitive Behavioural Therapy, Toronto, Canada

    Sharon Simpson

  4. Cumming School of Medicine, Hotchkiss Brain Institute, University of Calgary, Calgary, Canada

    Sarah A. Morrow

  5. Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, Canada

    Sarah A. Morrow

  6. London Health Sciences Centre, University of Western Ontario, London, Canada

    Sarah A. Morrow

  7. College of Medicine, University of Saskatchewan, Saskatoon, Canada

    Sarah Donkers

  8. Department of Physical Medicine and Rehabilitation, College of Medicine, University of Saskatchewan, Saskatoon, Canada

    Katherine Knox

  9. Department of Psychiatry, University of Toronto, Toronto, Canada

    Anthony Feinstein

  10. Department of Psychiatry, Sunnybrook Health Sciences Centre, Toronto, Canada

    Anthony Feinstein

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Contributions

Conception and design: all authors. Data acquisition: SP, GF, RS. Data analysis and interpretation: GF, SP, AS, SM, RS. Manuscript writing: GF, SP, SM, RS. Manuscript revision: all authors. All authors have approved the final article.

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Correspondence to Robert Simpson.

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Feng, G., Posa, S., Sureshkumar, A. et al. Experiences of people with multiple sclerosis and clinicians in using cognitive behavioural therapies for hidden symptoms: a systematic review and meta-aggregation. J Neurol 271, 1084–1107 (2024). https://doi.org/10.1007/s00415-023-12116-z

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