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 A systematic review of the published and unpublished literature was conducted.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

SUBMITTER: Walklet E

PROVIDER: S-EPMC5123628 | biostudies-literature | 2016 Aug

REPOSITORIES: biostudies-literature

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Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis.

Walklet Elaine E Muse Kate K Meyrick Jane J Moss Tim T

Journal of neuromuscular diseases 20160801 3

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 ...[more]

PMID: 27854227

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Project description:Background Previous research indicating that women with differences of sexual development (DSD), namely women with Turner syndrome (TS), women with congenital adrenal hyperplasia (CAH), and women with XY-DSD, have an impaired psychosocial and sexual well-being and quality of life (QOL), was often limited by small samples and inadequate control groups (CGs). Only few studies analysed which psychosocial and sexual factors influence QOL in women with DSD and no study so far has examined whether the DSD-condition itself and the diagnostic group to which they belong moderate this influence. Methods We compared 301 women with TS, 221 women with CAH and 142 women with XY-DSD with 603 non-DSD women regarding depression, anxiety, self-esteem, attention deficit hyperactivity disorder, autism, social participation, body acceptance, relationship status, sexual satisfaction and QOL. Furthermore, we investigated the influence of psychosocial and sexual well-being on QOL within and between diagnostic groups and examined whether the DSD-condition moderates the influence of psychosocial and sexual well-being on QOL. Results Women with DSD reported average psychosocial well-being and QOL; only women with CAH reported an impaired physical QOL. However, women with DSD were less satisfied with their body and had less often a partner than women in the CG. Women with CAH and XY-DSD were less satisfied with their sex life compared to women in the CG. Across groups, better health and lower depression scores predicted better QOL, whereas higher self-esteem especially predicted better QOL in women with DSD. The presence of DSD moderated the influence of psychosocial and sexual well-being on QOL, however, the specific diagnosis group mainly moderated the influence on physical QOL. Conclusion We have learned that body and sexual satisfaction need further attention in women with DSD. To optimize their QOL, psychosocial well-being should be taken in account. The improvement of self-esteem seems particularly relevant for women with DSD, as this helps coping with having a variant of sexual development. Highlights • Psychosocial wellbeing and QOL in women with DSD are similar compared to women of the general population.• Psychosexual wellbeing and body satisfaction in women with DSD are still reduced.• Quality of life in women with DSD is best predicted by good health, low depression and high self-esteem.• Self-esteem predicts quality of life better in women with than without DSD.

Project description:BackgroundArthrogryposis multiplex congenita (AMC) is a group of congenital conditions characterized by joint contractures in two or more body areas. Management of AMC starts early in life and focuses on improving mobility and function through intensive rehabilitation and surgical interventions. Psychosocial wellbeing is an important determinant of health and the psychosocial experience of individuals with AMC should be considered in the management of this condition. The aim of this scoping review was to explore what is known about the psychosocial wellbeing of children and adults with AMC, to identify the outcome measures used and to explore the factors associated with psychosocial outcomes in this population.MethodsA comprehensive search in four databases was conducted. Articles discussing psychosocial outcomes and outcome measures used with children or adults with AMC were included. Data on the measures used, psychosocial outcomes, and factors associated with psychosocial outcomes, were extracted and analyzed descriptively and synthesized narratively.ResultsSeventeen articles were included in this scoping review, ten including the pediatric population, six including adults and one article including both children and adults with AMC. The most commonly used outcome measures were the PODCI in the pediatric studies, and the SF-36 in studies on adults. In the pediatric studies, psychosocial outcomes were often secondary, compared to the studies on adults. Results showed that in both children and adults, psychosocial outcomes are comparable with the levels of the general population. Qualitative studies reflected the affective needs of this population and issues with emotional wellbeing. Factors such as fatigue and pain were associated with poorer psychosocial outcomes in adults with an impact on social relationships, intimacy and family planning.ConclusionValidated outcome measures, qualitative approaches and longitudinal studies are needed to better understand the psychosocial outcomes in AMC over time. Psychosocial support should be part of the multidisciplinary management of AMC throughout the lifespan.

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Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis.

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Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis.

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