title: Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis.
abstract: Quality of life and well-being are frequently restricted in adults with neuromuscular disorders. As such, identification of appropriate interventions is imperative. The objective of this paper was to systematically review and critically appraise quantitative studies (RCTs, controlled trials and cohort studies) of psychosocial interventions designed to improve quality of life and well-being in adults with neuromuscular disorders. A systematic review of the published and unpublished literature was conducted. Studies meeting inclusion criteria were appraised using a validated quality assessment tool and results presented in a narrative synthesis. Out of 3,136 studies identified, ten studies met criteria for inclusion within the review. Included studies comprised a range of interventions including: cognitive behavioural therapy, dignity therapy, hypnosis, expressive disclosure, gratitude lists, group psychoeducation and psychologically informed rehabilitation. Five of the interventions were for patients with Amyotrophic Lateral Sclerosis (ALS). The remainder were for patients with post-polio syndrome, muscular dystrophies and mixed disorders, such as Charcot-Marie-Tooth disease, myasthenia gravis and myotonic dystrophy. Across varied interventions and neuromuscular disorders, seven studies reported a short-term beneficial effect of intervention on quality of life and well-being. Whilst such findings are encouraging, widespread issues with the methodological quality of these studies significantly compromised the results. There is no strong evidence that psychosocial interventions improve quality of life and well-being in adults with neuromuscular disorders, due to a paucity of high quality research in this field. Multi-site, randomised controlled trials with active controls, standardised outcome measurement and longer term follow-ups are urgently required.
authors.affiliation: Health and Social Sciences Department, University of the West of England, Bristol, UK.|Psychology Department, University of Worcester, Worcester, UK.
authors.forename: Elaine
authors.initials: E
authors.lastname: Walklet
authors.affiliation: Psychology Department, University of Worcester, Worcester, UK.
authors.forename: Kate
authors.initials: K
authors.lastname: Muse
authors.affiliation: Health and Social Sciences Department, University of the West of England, Bristol, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Meyrick
authors.affiliation: Health and Social Sciences Department, University of the West of England, Bristol, UK.
authors.forename: Tim
authors.initials: T
authors.lastname: Moss
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology / Q000534:rehabilitation; D002607:Charcot-Marie-Tooth Disease / Q000523:psychology / Q000534:rehabilitation; D015928:Cognitive Behavioral Therapy; D030881:Disclosure; D006801:Humans; D006990:Hypnosis; D008603:Mental Health; D009136:Muscular Dystrophies / Q000523:psychology / Q000534:rehabilitation; D009157:Myasthenia Gravis / Q000523:psychology / Q000534:rehabilitation; D009223:Myotonic Dystrophy / Q000523:psychology / Q000534:rehabilitation; D009468:Neuromuscular Diseases / Q000523:psychology / Q000534:rehabilitation*; D010353:Patient Education as Topic; D016262:Postpoliomyelitis Syndrome / Q000523:psychology / Q000534:rehabilitation; D011788:Quality of Life
keywords: Neuromuscular diseases; adult; psychology; quality of life; review