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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