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Table 1 Basic characteristics and quality rating of the included studies

From: The health-related quality of life, mental health and mental illnesses of patients with inclusion body myositis (IBM): results of a mixed methods systematic review

Study, year

Context country

Study design

Study population total/N

Female IBM

n/%

Applied diagnostic criteria IBM

n

Risk of bias assessment

NOS

AXIS

MMAT

Feldon et al. [34], 2017

USA, Canada

Cross-sectional

IIM 1648/

PM 481

DM 702

IBM 465

186/40

n not stated; possible or probable IBM [40];*

7/9

Yes: 11

No: 5

Do not know: 4

Yes: 5

No: 0

Can’t tell: 0

Goyal et al. [36], 2016

USA

Cross-sectional

IBM 25

6/24

19 clinically defined IBM, 6 probable IBM [42]

5/9

Yes: 12

No: 3

Do not know: 5

Yes: 2

No: 1

Can’t tell: 2

Rose et al. [39], 2012

USA

Cross-sectional

NMD 302/

LGMD 91

FSHD 49

PM/DM 19

IBM 24

MD 79

Misc 40

6/25

 > 6 months with confirmed diagnosis**

7/9

Yes: 14

No: 2

Do not know: 4

Yes: 4

No: 0

Can’t tell: 1

Sadjadi et al. [38], 2010

UK

Cross-sectional (RCT data)

IBM 60

22/37

n not stated; definite or possible IBM [40]

6/9

Yes: 8

No: 4

Do not know: 8

Yes: 4

No: 0

Can’t tell: 1

Gibson et al. [35], 2016

USA

Qualitative

IBM 10

4/40

10 clinicopathologically defined IBM [42]

Yes: 5

No: 0

Can’t tell: 0

Ortega et al. [37], 2010

Australia

Qualitative

IIM 14/

PM 8

DM 4

IBM 2

not stated

n not stated; applied criteria [41] “South Australian Database for Patients With Biopsy-Proven Inflammatory Myositis”

Yes: 1

No: 1

Can’t tell: 3

  1. AXIS: Appraisal tool for Cross-Sectional Studies; DM: dermatomyositis; FSHD: facioscapulohumeral muscular dystrophy; IBM: inclusion body myositis; IIM: idiopathic inflammatory myopathies; IQR: interquartile range; LGMD: limb girdle muscular dystrophies; MD: myotonic dystrophy; MMAT: Mixed Methods Appraisal Tool; NMD: neuromuscular diseases; NOS: Newcastle–Ottawa scale; PM: polymyositis
  2. *Additional validation of patients’ self-reports with a partial sample (6.7% of N), 87% matching with a physician’s diagnose
  3. **Muscle biopsy, genetics, raised creatine kinase levels, neurophysiology, expert opinion