Skip to main content

Table 11 Results of studies assessing construct validity of the instruments included in the review

From: Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN

Instrument

Validity study type

N (DMD subsample)

Mean (SD) Age (DMD subsample)

% Female (DMD subsample)

Country

Results consistent with reviewer hypotheses

Rating

Quality of evidence

CSI

Known groups [7]

80

57 (6.8)

69

Netherlands

0 out of 1

Very low

DUKE

Convergent [36]

126

43 (6.1)

57.14

Taiwan

3 out of 4

+

High

Known groups [40]

113 (55 DMD)

45.89 (7.27) (DMD 44.87 (7.23))

57.52 (DMD 56.36)

Taiwan

0 out of 1

EQ-5D-3L

Known groups [31]

770

44 (8)

79

Germany, Italy, UK, US

13 out of 18

Low

ESS

Known groups [45]

70 (35 DMD)

46.3 (1.3) for DMD carers

100

Brazil

1 out of 2

Low

FAPGAR

Convergent [36]

126

43 (6.1)

57.14

Taiwan

3 out of 4

+

High

Known groups [40]

113 (55 DMD)

45.89 (7.27) (DMD 44.87 (7.23))

57.52 (DMD 56.36)

Taiwan

1 out of 1

+

HADS (Anxiety)

Convergent [7]

80

57 (6.8)

69

Netherlands

2 out of 2

+

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

HADS (Depression)

Convergent [7]

80

57 (6.8)

69

Netherlands

1 out of 1

+

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

PAS

Convergent [51]

205 at baseline (147 at year 1, 144 at year 2)

44 (8.7)

100

USA

3 out of 8

Very low

PedsQL FIM

Known groups [49]

15

41.7 (not reported)

60

China

1 out of 2

Very low

PSQI

Known groups [52]

64 (32 DMD)

46.2 (8.1) for DMD carers

100

Brazil

1 out of 1

+

Moderate

Known groups [45]

70 (35 DMD)

46.3 (1.3) for DMD carers

100

Brazil

0 out of 1

PSS

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

Low

QRS

Convergent [53]

36

43.04 (5.52)

69.44

Canada

3 out of 3

+

Moderate

Convergent [54]

56 (17 DMD)

43.4 (4.5) for DMD carers

64.29 (82.35 for DMD)

Canada

1 out of 1

+

SCL-90-R

Convergent [56]

35

NR

91.43

USA

6 out of 8

+

Very low

SF-12 (MCS)

Known groups [31]

770

44 (8)

79

Germany, Italy, UK, US

2 out of 3

Low

SF-36 (BP/Pain)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

5 out of 8

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SF-36 (E|F/VT)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

5 out of 8

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SF-36 (EW/MH)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

6 out of 8

+

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SF-36 (GH)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

6 out of 8

+

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SF-36 (MCS)

Convergent [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

2 out of 4

Low

SF-36 (PCS)

Convergent [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

4 out of 4

+

Low

SF-36 (PF)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

8 out of 8

+

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SF-36 (RE)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

8 out of 8

+

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SF-36 (RP)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

7 out of 8

+

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SF-36 (SF)

Convergent + known groups [33]

62

(53 DMD)

40.1 (8.8) for DMD carers

66.13 (62.2 DMD)

Taiwan

4 out of 8

High

Known groups [32]

82 (71 DMD)

40.40 (6.98)

100

USA

1 out of 1

+

SNQ (Subscale A)

Convergent [46]

336

(246 DMD)

41.2 (6.2) for DMD carers

84.2 (83.3 DMD)

Italy

1 out of 3

Very low

STAI-X (state)

Known groups [55]

37 (17 DMD)

37.68 (8) for DMD carers

100

Turkey

0 out of 1

Very low

STAI-X (trait)

Known groups [55]

37 (17 DMD)

37.68 (8) for DMD carers

100

Turkey

0 out of 1

Very low

SWLS

Convergent [54]

56

(17 DMD)

43.4 (4.5) for DMD carers

64.29 (82.35 for DMD)

Canada

1 out of 1

+

Very low

WHOQOL-BREF

Convergent [58]

31

38 (not reported)

83.87

Brazil

1 out of 3

Moderate

Convergent + known groups [57]

30

39.20 (8.32)

93.3

Brazil

5 out of 6

+

Known groups [34]

90 (67 DMD)

42.9 (8.7)

90

South Korea

0 out of 1

ZBI (22 item)

Convergent [58]

31

38 (not reported)

83.87

Brazil

2 out of 3

Low

Convergent [59]

35

38.7 (8.2)

91.4

Brazil

0 out of 4

Known groups [31]

770

44 (8)

79

Germany, Italy, UK, US

3 out of 3

+

  1. Citation next to validity study type is for the study assessing this measurement property.
  2. BP/Pain, bodily pain/pain subscale; E|F/VT, energy|fatigue/vitality subscale; EW/MH, emotional wellbeing/mental health subscale; GH, general health subscale; MCS, mental component summary score; PCS, physical component summary score; PF, physical functioning subscale; RE, role emotional subscale; RP, role physical subscale; SF, social functioning subscale