Effects of non-pharmacological and non-surgical interventions on health outcomes in systemic sclerosis: protocol for a living systematic review

Abstract

IntroductionSystemic sclerosis (SSc; scleroderma) is a rare, chronic, autoimmune disease with a high level of burden, a significant impact on the ability to carry out daily activities, and a considerable negative impact on health-related quality of life. Non-pharmacological interventions could be provided to potentially improve mental and physical health outcomes. However, the effectiveness of non-pharmacological interventions on health and well-being among individuals with SSc has not been well established. The proposed living systematic review aims to identify and evaluate randomised controlled trial (RCT) evidence on the effectiveness of non-pharmacological and non-surgical interventions on mental and physical health outcomes and on the delivery of such services in SSc.Methods and analysisEligible studies will be RCTs that examine non-pharmacological and non-surgical interventions aimed at improving health outcomes among individuals with SSc or the delivery of services intended to improve healthcare or support of people with SSc (eg, support groups). All RCTs included in a previous systematic review that sought studies published between 1990 and March 2014 will be evaluated for inclusion. Additional trials will be sought from January 2014 onwards using a similar, augmented search strategy developed by a health sciences librarian. We will search the MEDLINE, Embase, CINAHL, PsycINFO, Cochrane Library and Web of Science databases and will not restrict by language. Two independent reviewers will determine the eligibility of identified RCTs and will extract data using a prespecified standardised form in DistillerSR. Meta-analyses will be considered if ≥2 eligible RCTs report similar non-pharmacological interventions and comparable health outcomes. We will conduct a qualitative synthesis for interventions that cannot be synthesised via meta-analysis.Ethics and disseminationWe will post initial and ongoing results via a website, publish results periodically via peer-reviewed journal publication, and present results at patient-oriented events.PROSPERO registration numberCRD42020219914.

Effects of non‐pharmacological therapies on hand function and the ability to perform daily activities in people with systemic sclerosis: A systematic review and meta‐analysis of randomized control trials

“…SSc, in functional terms, affects body care and dressing, household chores, medical care, leisure activities (eg, shopping, sport, cultural and religious activities), mobility, parenting, professional activities, and sexuality 16,18,19 . Because of the limitations mentioned above, individuals report renouncing their “previous life” and the need for both pharmacological and non‐pharmacological interventions to alleviate the consequences of SSc 20–22 . Non‐pharmacological interventions can provide complementary therapy, offering versatile approaches to improve outcomes like hand function in addition to a decrease in pain, depression, and fatigue as well as to improve or sustain quality of life and performance of daily activities.…”

“…16,18,19 Because of the limitations mentioned above, individuals report renouncing their "previous life" and the need for both pharmacological and non-pharmacological interventions to alleviate the consequences of SSc. [20][21][22] Nonpharmacological interventions can provide complementary therapy, offering versatile approaches to improve outcomes like hand function in addition to a decrease in pain, depression, and fatigue as well as to improve or sustain quality of life and performance of daily activities.…”

Randomized controlled trial of an internet-based self-guided hand exercise program to improve hand function in people with systemic sclerosis: the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND) trial

“…Existing evidence, however, tends to be descriptive or from very small trials with important limitations in design, conduct, and reporting [ 15 ]. As part of an ongoing living systematic review [ 16 ], we identified 11 randomized controlled trials (RCTs) that evaluated physical or occupational therapy interventions designed specifically to improve hand function in SSc, but none analyzed data from ≥ 30 participants per trial arm [ 13 , 14 , 17 – 25 ]. Two other small trials have evaluated a 12-week multidisciplinary day treatment program ( N = 53) [ 26 ] and a minimally supervised general home exercise program ( N = 44) [ 11 ]; both included hand exercises and reported that the interventions improved grip strength.…”

A Comprehensive Approach to Rehabilitation Interventions in Patients with Angelman Syndrome: A Systematic Review of the Literature

“…To date, there is no cure for disorders such as AS because there are still no definitive ways of repairing chromosomal defects or of restoring function to mutated genes. At present, optimal care management and rehabilitation are the only options for improving the health-related quality of life in children affected by neuromuscular disorders [12][13][14][15][16][17][18][19][20][21]. In such conditions, the goal of rehabilitation is to achieve and maintain optimum functioning in interaction with environments, following the International Classification of Functioning (ICF) approach to disability, which understands functioning and disability as a dynamic interaction between the health condition and contextual factors, both personal and environmental [22][23][24].…”