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 A systematic review of the published and unpublished literature was conducted.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.

Factors associated with quality of life of people with Myasthenia Gravis

“…In the field of psycho-oncology, for example, psychosocial intervention programs are run for cancer patients in many different countries and cultures. Even though there is no strong evidence that psychosocial interventions improve QOL and well-being in adults with neuromuscular disorders, including MG, yet, it is also attributed to the paucity of high quality research in this field [ 30 ]. To promote the patients’ psychosocial well-being, while their physical condition is managed by pharmaceuticals, certain programs to encourage people to integrate the conditions and to develop meaning out of the experience might be helpful.…”

Clinical spectrum and quality of life in patients with chronic polyneuropathy: A cross‐sectional study

“…The study also looked at QoL in these patients, which has not been done earlier in Indian population. SF‐36 was chosen over other scales done in patients with polyneuropathy because of its widespread use and brevity. The limitation of the study is the referral bias and cross‐sectional design.…”

Subjective symptom impact on quality of life in patients with myotonic dystrophy

“…In fact, disease perception is one of the determinants of coping and/or psychological distress [7,26]. Therefore, although definitive evidence of the effectiveness of psychosocial interventions for patients with muscular diseases is unavailable [27], it is plausible to consider that psychosocial interventions, such as cognitive behavior therapy or neuropsychological interventions, could optimize QoL in these patients [28][29][30]. A recent randomized controlled trial for fatigued patients with DM1 showed cognitive behavioral therapy could increase patient's perceived capacity for activity and social participation, whereas there were no significant differences in disease burden and QoL between intervention and standard care group [31].…”