Self‐management interventions in systemic sclerosis: A systematic review

• Published in: Research in nursing & health Vol. 44; no. 2; pp. 376 - 392
• Main Authors: Wojeck, Robyn K., Bailey, Donald E., Somers, Tamara J., Knisely, Mitchell R.
• Format: Journal Article
• Language: English
• Published: United States Wiley Subscription Services, Inc 01-04-2021
• Subjects: Adults; Autoimmune diseases; Clinical outcomes; common data element; Disease management; Efficacy; Humans; Intervention; Nursing; Physical ability; Rehabilitation; Scleroderma; Scleroderma, Systemic; Self-Management; Systematic review; Systemic diseases; Systemic sclerosis; systemic sclerosis; systematic review; common data element; self-management; scleroderma
• ISSN: 0160-6891; 1098-240X
• DOI: 10.1002/nur.22118

Systemic sclerosis is a rare and incurable autoimmune disease in which patients are challenged with self‐managing their disease. Systematic evaluation of the essential self‐management intervention components and self‐management outcomes is necessary to assess the state of the science of self‐management for patients with systemic sclerosis. As such, the purpose of this systematic review was to identify and describe self‐management interventions and their impact on self‐management outcomes in adults with systemic sclerosis. Studies were included if they contained a self‐management intervention, incorporated at least one self‐management outcome identified as a common data element by the National Institute of Nursing Research (i.e., patient activation, self‐efficacy, self‐regulation, global health), and were conducted in adults with systemic sclerosis. Using the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis guidelines, PubMed, Cumulative Index of Nursing and Allied Health Literature, and Embase were searched from the inception of each database to March 2020, yielding a total of 215 studies. Of these reports, 16 met the inclusion criteria for this review. There was notable variability in the types of self‐management interventions and their effects on key self‐management outcomes. Self‐management interventions focused on improving physical function through rehabilitation programs were the most common interventions (n = 7). The poor methodological quality of the studies included in this systematic review, however, limited the synthesis of and recommendations for self‐management interventions in adults with systemic sclerosis. Future research in systemic sclerosis should include key self‐management outcomes in larger, more rigorously designed studies to allow for comparisons across studies and to advance the science of self‐management.