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Table 1 Characteristics of Qualitative Studies Included in the Systematic Review

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

Author Year Country Diseasea (N) Mean Age Sex (%F) Study Methods Aim
Studies with SLE only
 Feldman et al. [22] 2013 USA SLE (29) 51 (range 25–81) 100 Focus groups To determine interventions perceived to improve care
 Mazzoni et al. [29] 2014 Italy SLE (9) 50.6 (range 41–61) 100 Face-to-face interview To explore the experiences of problematic support from SLE patients’ perspective
 Neville et al. [31] 2014 Canada SLE (29) - (range 18–69) 93.1 Focus groups To identify the informational and resource needs of persons with lupus
 Singh et al. [32] 2015 USA SLE (52) 40.6 (range not given) Nominal group technique To determine what factors facilitated decisional processes involving medications
 Hale et al. [23] 2015 USA SLE (15) 41.7 (range 22–57) 93.3 Semi-structured interviews To explore the interactions between body image, self-image, medication use, and adherence to medication use in SLE
 Brennan et al. [36] 2016 UK
Ireland
SLE (133) Open-ended questionnaire To explore perceptions of the quality and impact of social support for individuals with SLE
 Tunnicliffe et al. [34] 2016 Australia SLE (26) 92 Focus groups
Semi-structured interviews
To describe the experiences, perspectives, and health care needs of adolescents and young adults with SLE
 Mathias et al. [27] 2017 USA SLE (33) 47.0 (range 24–71) 97 Semi-structured interviews To develop a PRO measure which can be used to assess general impact (baseline burden), benefits, side effects, and impacts associated with oral steroid use over time in patients with SLE.
Studies with other SARDs
 Mooney et al. [30] 2013 UK CSS (3)
GPA (10)
PAN (2)
63.6 (range 39–80) 66.7 Focus groups
Face-to-face interviews
To explore the informational needs of patients with AAV
 Suarez-Almazor et al. [33] 2015 USA SSc (19) 49 (range not given) 90 Focus groups
Face-to-face interview
To identify subjective domains that need to be measured in order to improve patient-centered outcome measurement for SSc.
 Lackner et al. [25] 2017 Austria Primary Sjogren’s syndrome (20) 62 (range not given) Focus groups To explore the perspectives and aspects of HRQL in patients with PSS in a qualitative manner.
Studies with mixed patient populations including SLE and other SARDs
 Alparslan et al. [35] 2010 Turkey Arthritis (60)
Renal diseases (42)
SLE (22)
Otherb (22)
67.1 Semi-structured interviews To determine the changes and difficulties experienced by patients due to the side effects of steroids and how they affect their lives
 Larsson et al. [26] 2010 Sweden RA (8)
PA (3)
SLE (1)
OA (4)
Fibromyalgia (2)
Sjogren’s syndrome (3)
Spondyloarthritis (1)
56 (range 35–79) 66.7 Semi-structured interviews To describe variations in how inpatients with rheumatic diseases perceive drug information provided by a rheumatology nurse
 Carpenter et al. [20] 2012 USA CSS (28)
GPA (132)
MPA (18)
Takayasu arteritis (12)
Otherc (31)
51 (range 20–82) 91 Semi-structured interviews To determine issues that negatively impacted patients’ ability to participate in social activities with friends
 Applebaum et al. [19] 2013 USA SLE (14)
JIA (7)
Otherd (14)
16.9 (range 13–21) 74.3 Focus groups
Surveys
To identify the current status of teens embarking on the transition of care process
 Cleanthous et al. [21] 2013 UK SLE (17) 44 (range 20–73) 94.1 Structured interviews To determine aspects of uncertainty in SLE and RA
RA (15) 57 (range 29–79) 66.7 Semi-structured interviews
 Knight et al. [24] 2016 USA SLE (11)
MCTDf (5)
17 (range not given) 81 Semi-structured interviews To provide a framework for informing subsequent research and care.
 Mathias et al. [27] 2017 USA SLE (14)e 41.6 (range 19–61) 93 Semi-structured interviews To develop a comprehensive, SLE-specific, patient-reported outcome measure to assess patient satisfaction with treatment, treatment options, and medical care.
  1. aAbbreviations: SLE Systemic Lupus Erythematosus, SSc Systemic Sclerosis, JIA Juvenile idiopathic arthriti, CSS Churg-Strauss syndrome, GPA Granulomatosis with polyangitis, MPA Microscopic polyangiitis, RA Rheumatoid arthritis, HSP Henoch-Schoenlein purpura, PAN Polyarteritis nodosa, PA Polyarthritis, OA Osteoarthritis
  2. bPolymyositis, scleroderma, and Sjogren’s syndrome
  3. cUndefined
  4. dMixed connective tissue disease, asthma, ulcerative colitis and ten different rheumatologic conditions
  5. eConcomittant Vasculitis (2), Lupus nephritis (2), Sjogren’s syndrome (1)
  6. fMCTD Mixed connective tissue disease
  7. The entries were bolded to show which conditions are SARDs