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Table 4 Outcome measures categorised according to pain, function and quality of life

From: Outcome measures for assessing change over time in studies of symptomatic children with hypermobility: a systematic review

Outcome measures

Follow-up Timeframe d

Baseline

Mean (SD)

Mean change in outcome at follow-up a

95% CI

Scale

Test details

Type

    

PAIN (Intensity)

VAS [45, 46]

(Visual Analogue scale)

0-100

0 = no pain

100 = worst pain

PRO

2 months [42]

Neutral treatment group: 40.0 (16.6)

-19.9

NR

Hypermobility treatment group: 38.6 (16.9)

-9.19

NR

Combined groups: 39.4 (14.2)

-14.5

-5.2, -23.8

5 months e

[41]

Targeted Physiotherapy: 55.5 (21.3)

-21.2

-38, -4.5

General Physiotherapy: 62.1 (24.1)

-30.6

-50.16, -11.0

Combined groups: 57.6 (20.1)

-25.8

-38.5, -13.1

WBFPS [47, 48]

(Wong-baker faces pain scale)

0-5

0 = no pain

5 = worst pain

PRO

12 months

[39]

Intervention: 2.2 (1.4)

-1.6

-2.1, -1.1

Control: 2.5 (1.6)

-1.6

-2.0, -1.2

PAIN (Intensity)

VAS-P [49]

(Visual Analogue scale-Parental)

0-100

0 = no pain

100 = worst pain

PRO b

5 months

[41]

Targeted Physiotherapy: 45.1 (23.0)

-21.6

-33.2, -10.0

General Physiotherapy: 48.4 (22.9)

-12.

-23.3, 0.9

Combined groups:

46.7 (22.7)

-17.2

-25.3, -9.1

  

12 months

[39]

Intervention: 33.8 (24.8)

-6.8

-14.3, 0.7

Control: 40.6 (27.5)

-7.3

-15.4, 0.8

FUNCTION

CHAQ [50] (Childhood Health Assessment Questionnaire)

0-3

0 = Without any difficulty

1 = With some difficulty

2 = With much difficulty

3 = Unable to do

PRO b

2 months

[42]

Neutral treatment group:

-0.13 (0.44)

0.12

NR

Hypermobility treatment group:

0.04 (0.71)

0.02

NR

Combined groups: -0.5 (0.6)

0.07

-0.1, 0.2

5 months

[41]

Targeted Physiotherapy: 0.62 (0.65)

-0.15

-0.3, -0.02

General Physiotherapy: 0.76 (0.68)

-0.16 (

-0.4, 0.1

Combined groups: 0.69 (0.66)

-0.15

-0.3, -0.02

12 months

[39]

Intervention: 0.84 (0.62)

0.04

0.1, 0.2

Control: 0.86 (0.72)

−0.02

-0.12, 0.08

Dynamometry [51]

Measurement of strength

Grip strength. Units: kilopascals

CRO

12 months

[39]

Intervention: 57.0 (25.0)

4.7

0.1, 9.3

Control: 59.4 (31.7)

7.3

2.9, 11.7

Knee flexor and extensor strength. Units: Newtons

2 months

[42]

Neutral treatment group: 4.0 (1.7)

0.88

NR

Hypermobility treatment group: 4.4 (2.4)

1.21

NR

Combined groups: 4.2 (2.0)

1.1

0.4, 1.7

FUNCTION

M-ABC2 [52]

(Movement Assessment Battery for Children, 2nd Edition)

Measures coordination

Raw scores converted to centiles (0 – 100) with higher centiles indicating better performance compared to peers

CRO

12 months

[39]

Intervention: 33.4 (26.7)

3.8

-1.7, 9.3

Control: 35.6 (30.1)

10.8

5.4, 16.2

PODCI [53, 54]

(Pediatric Outcomes Data Collection Instrument)

0-100

100= highest functioning

PRO b

3 months

[40]

Transfer and basic mobility domain

Intervention: 82.1 (14.8)

11.8

0.30, 1.43

Control: 94.2 (14.8)

1.2

-0.46, 0.62

6 MWT [55]

(6 min walk test)

Maximum distance walked in 6 minutes (meters/leg length)

CRO

36 months

[44]

Able/moderate: 7.3 (1.6) c

-1.5

-1.3, -4.5

Severe: 5.3 (1.6)

-2.3

-2.4, -2.7

No. of flights of stairs climbed in 2 min

[56]

Assesses functional ability in stairclimbing

CRO

2 months

[42]

Neutral treatment group: 16.3 (5.0)

3.8

NR

Hypermobility treatment group: 20.9 (6.7)

-0.33

NR

Combined groups: 18.6 (5.7)

1.7

-0.5, 3.9

Quality of Life

CHU9D [57]

(Child Health Utility 9D)

0-4

higher scores indicate poorer HRQoL

PRO

12 months

[39]

Intervention: 0.85 (0.10)

0.02 (0.09)

-0.004, 0.04

Control: 0.85 (0.12)

0.00 (0.12)

-0.03, 0.03

CHQ-PF50 [58]

(Child Health Questionnaire)

0-100

0 = worst QoL

100 = Best QoL

PRO b

2 months [42]

Physical summary score

Neutral treatment group:

32.0 (11.9)

10.1

NR

Hypermobility treatment group: 41.6 (15.0)

2.3

NR

Combined groups: 38.0 (12.6)

5.3

1.7, 8.9

Psychological summary score

Neutral treatment group:

46.4 (12.3)

-0.9

NR

Hypermobility treatment group: 46.3 (9.0)

8.1

NR

Combined groups: 48 (10.3)

2.7

-0.3, 5.8

Quality of Life

PGIC [59, 60]

(Patient global impression of change)

1-7

1= very much improved

7= very much

worse

PRO

2 months

[42]

Neutral treatment group:

0.3 (1.1)

1.4

NR

Hypermobility treatment group: 0.2 (0.9)

1.6

NR

Combined groups: 0.2 (1.0)

1.5

1.0, 2.0

PODCI [53] (Pediatric Outcomes Data Collection Instrument)

Pain comfort

Happiness

0-100

Higher score means higher health-related quality

PRO b

3 months

[40]

1. Pain/comfort:

Intervention:

83.9 (16.2)

4.9

-0.22, 0.87

Control: 84.4 (17)

-1.2

-0.61, 0.47

2. Happiness:

Intervention: 79.5 (18.7)

-0.2

-0.55, 0.53

Control: 80.7 (15.9)

-0.9

-0.60, 0.48

PedsQL parent proxy-reported format [61] and [62] (Pediatric Quality of Life Inventory-Generic Core Scale)

0-100

Lower score indicates lower quality of life

PRO b

3 months

[40]

1. Physical

Intervention:

62.3 (19.9)

3.9

-0.35, 0.73

Control: 79.2 (20.1)

-8.1

-0.95, 0.14

2. Psychosocial

  

Intervention:

65.6 (16.3)

0.9

-0.49, 0.59

Control: 73.8 (18.8)

0.3

-0.52, 0.56

Quality of Life

Global-VAS (parent’s global assessment)

0-100

0 = no impact of hypermobility

100 = high impact of hypermobility

PRO b

5 months

[41]

Targeted Physiotherapy:

36.1 (26.4)

General

-17.6

-31.1, -4.1

Physiotherapy:

37.2 (25.3)

3.7

-7.8, 15.3

Combined groups: 36.6 (25.7) n = 32

-7.6

-17.2, -2.0

  1. Abbreviations. 95% CI: 95% Confidence Interval; CRO: Clinician-reported outcome; GP: Generalised Physiotherapy; HRQOL=health-related quality of life; QoL: quality of life; PRO: Patient-reported outcome
  2. a difference in change score from baseline (outcome-baseline)
  3. b Indicates Parent reported outcomes
  4. c Data calculated by primary author to demonstrate the difference between children of different severity and supplied to the authorship team upon request. This was only able to be provided for 6MWT, not the other variables
  5. d Time points are when outcome measurements are reported
  6. e Authors converted the faces pain scale to a 0–100 scale to combine with VAS data