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. |