Table 1.
Characteristics of Qualitative Studies Included in the Systematic Review
| 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. |
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
bPolymyositis, scleroderma, and Sjogren’s syndrome
cUndefined
dMixed connective tissue disease, asthma, ulcerative colitis and ten different rheumatologic conditions
eConcomittant Vasculitis (2), Lupus nephritis (2), Sjogren’s syndrome (1)
fMCTD Mixed connective tissue disease
The entries were bolded to show which conditions are SARDs