How do patients with systemic autoimmune rheumatic disease perceive the use of their medications: a systematic review and thematic synthesis of qualitative research

Hans Haag,Mary A De Vera,Tim Liang,J Antonio Avina-Zubieta

doi:10.1186/s41927-018-0017-8

Abstract

Pharmacotherapy is paramount to the management of systemic autoimmune rheumatic diseases (SARDs), yet there is sub-optimal adherence and limited adherence interventions. To understand how to better support patients’ medication use, our two-fold objectives were: 1) to conduct a systematic review of qualitative research studies of medication taking among SARD patients; and 2) to thematically synthesize qualitative research studies to obtain SARD patients’ perspectives and experiences with medication use.We conducted a search of MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, and Social Sciences Citation Index databases to identify qualitative research studies exploring views on medication use among patients with SARDs, their healthcare providers, or caregivers. We used thematic synthesis to combine data from selected studies, and identify analytical themes on SARD patients’ perspectives and experiences with medication use.Our systematic review identified 18 studies. Thematic synthesis identified seven analytical themes: 1) effects of medications on emotional and social well-being, 2) impacts of healthcare provider relationships on treatment, 3) gaining control over treatment, 4) fear and concern with side effects of treatment, 5) understanding the importance of treatment, 6) practical barriers to taking medication, and 7) motivation towards adherence to treatment.This systematic review and thematic synthesis contributes to better understanding of SARDs patients’ perspectives on medication use. Given the paucity of existing adherence interventions targeting this patient population, our study has certain practical implications for care, namely the need to address emotional and social impacts of medication use and the necessity of establishing a meaningful and trusting professional relationship with patients.

Highlights

Pharmacotherapy is paramount to the management of systemic autoimmune rheumatic diseases (SARDs), yet there is sub-optimal adherence and limited adherence interventions
Characteristics of studies included in the systematic review Our search strategy as shown in Fig. 1 identified 7392 articles after the removal of duplicates, with 197 forwarded for full-text review
With respect to types of Systemic autoimmune rheumatic disease (SARD), eight studies were based on systemic lupus erythematosus (SLE) only, three studies were based on other SARDs including systemic sclerosis (SSc), Sjogren’s syndrome and a mixed sample involving eosinophilic granulomatosis with polyangiitis, granulomatosis with polyangitis, and polyarteritis nodosa, and seven studies were based on mixed samples including patients with SLE, other SARDs, and other inflammatory arthritides

Summary

Introduction

Pharmacotherapy is paramount to the management of systemic autoimmune rheumatic diseases (SARDs), yet there is sub-optimal adherence and limited adherence interventions. In the acute phase of treatment, glucocorticoids are considered first-line therapy, but their side effect profile limits their chronic use so antimalarials and immunosuppressive medications are essential to long-term SARD therapy [2, 3]. With respect to other SARDs, studies reported adherence rates of 42% to treatments overall [5] and 64.1% to glucocorticoids [6], respectively among patients with SSc. Yet despite the evidence for suboptimal adherence in SARDs, there remains a scarcity of feasible adherence interventions - a 2015 systematic review identified only three interventions, all aimed at SLE, which showed inconsistent effects [7,8,9]

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Conclusion