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Table 4 Measurement properties of the included instruments

From: Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties

 

Internal consistency

Test-retest reliability

Interviews/focus groups

Pilot test

Convergent/divergent

Discriminant validity

Measurement error

Criterion validity

Responsiveness

For paediatrics

 IMPACT

0.96

ICC: 0.90

(1) Interview with 82 patients

(2) Based on IBDQ

(3) Item generation, reduction, and selection procedure

Pilot study, wording of question

Correlation with

(1) Current disease activity: −0.54

(2) Colitis symptom score: −0.40

(3) PCDAI: −0.63

(4) Disease activity pattern: −0.43

Higher scores for the patients with quiescent disease (P < 0.005)

Test-retest coefficients were calculated.

Correlation with

(1) Piers-Harris Happy domain: 0.61

(2) CHQ-87: 0.67

NA

 IMPACT-II

0.57 to 0.86

ICC: 0.67 to 0.91

Based on IMPACT

Pilot studies

NA

Higher scores in the patient with severe, moderate symptoms (P < 0.05)

Test-retest coefficients were calculated.

Correlations with Tacqol

(1) Item: 0.44 to 0.63

(2) Domain: 0.46 to 0.72

NA

 IMPACT-III

(1) Factor analysis conducted;

(2) 0.74 to 0.88

ICC: 0.66 to 0.84

Based on IMPACT

Pilot study (20 patients)

Paper and computer versions were comparable

Lower scores in the patient with severe, moderate symptom (P < 0.05)

Test-retest coefficients were calculated.

Correlations with domain of CHQ-87: 0.47 to 0.72

NA

For adults

 IBDQ-32

0.70

ICC: 0.90 to 0.99

(1) Interview with 97 patients

(2) The most frequent and important items

NA

Correlated with CDAI (r = −0.67)

Lower scores in patients who required surgery (P < 0.05)

Standard deviations of the score changes were of similar magnitude

Correlation of changes in IBDQ and other measures were similar (P < 0.05)

Sensitivity to change for the improved or deteriorated patients (P < 0.05)

 SIBDQ

(1) 0.78

(2) 92% and 90% of the variance in CD and UC were explained

r: 0.65

Based on IBDQ-32

NA

Correlation with

(1) SCCAI: −0.42 to −0.85

(2) Seo index: −0.41 to −0.64

Lower scores in the patients with moderate-severe relapse (P < 0.05)

Those with unchanged disease status showed no significant difference.

Correlation with the IBDQ-32 (P < 0.05)

(1) Sensitivity to change (P < 0.05)

(2) decreased by −0.93 for the relapsed patients

 IBDQ-36

NA

NA

Based on interviewer-administered measure

NA

NA

Lower score for IBD patients than the control (P < 0.05)

NA

NA

NA

 IBDQ-9

(1) Rasch analysis conducted;

(2) UC: 0.95; CD: 0.91

(1) r: 0.76 for UC, 0.86 for CD

(2) ICC: 0.82 for UC, 0.84 for CD

Based on IBDQ-36

Pilot test

(1) Item-total correlation: 0.59 to 0.85

(2) Correlation with clinical indices of activity: UC (r = 0.70) and CD (r = 0.70)

Lower scores in the patients with moderate-severe relapse (P < 0.01)

Scores of the first and second questionnaires correlated significantly

Correlation with IBDQ-36: 0.91

(1) Sensitivity to change (P < 0.01) (2) effect size: UC = −2.67, CD = −5.29

 RFIPC

(1) Factor analysis conducted;

(2) 0.79 to 0.91

(1) r* (instrument): 0.87

(2) r (item): 0.47 to 0.79

(1) 45-min interview

(2) items expressed by IBD patients

Add 3 items using pilot study

Associated with greater disease severity, female gender, and lower educational status.

Worse scores for the patients with lower educational status, greater disease severity, female patients and UC patients (P < 0.05)

Test-retest coefficients were calculated.

Associated with SCL-90 (P < 0.05)

NA

 CCQIBD

NA

r: 0.75 to 0.95

(1) Based on other instruments

(2) Review of the literature and professional experience

NA

NA

Lower scores for Crohn’s surgical patients (P < 0.05)

NA

Associated with sickness impact profile (P < 0.05)

NA

 PIBDQL

NA

NA

Comprehensive definition of the patients’ health

NA

PIBDQL scores had relationship with daily stools and CDAI score (P < 0.05)

(1) Higher scores for the surgical patients (P < 0.05)

(2) Lower scores for patients than healthy people (P < 0.05)

NA

NA

NA

 CGQL

0.866

NA

Structured interview

NA

NA

Lower scores in the patients with 0 ~ 5 years after surgery (P < 0.05)

NA

Correlation with SF-36: 0.31 to 0.74 (P < 0.05)

Sensitivity to change (P < 0.001)

 SHS

NA

r: 0.71 to 0.91

Theoretic model was presented.

NA

Correlation with PGWB: −0.51 to −0.78

Higher scores for the patients in relapse (P < 0.001)

Test-retest coefficients were calculated.

Correlation with

(1) IBDQ: −0.41 to −0.78

(2) RFIPC: 0.50 to 0.78

Change in SHS was related with change in disease activity P < 0.05)

 EIBDQ

(1) Factor analysis conducted

(2) Variance extracted: 63%

(3) 0.55 to 0.86

NA

Comprehensive review of the IBD literature

Pilot study

Correlation with CDAI

(1) CD: 0.52

(2) UC: 0.30

NA

NA

Correlation with SF-36

(1) CD: 0.48

(2) UC: 0.32

NA

 CLIQ

0.91–0.93

Rasch analysis conducted, Unidimensional

Reproducibility: 0.91

Literature review, qualitative interviews

Pilot study

Correlation with

(1) NHP: 0.53–0.80

(2) U-FIS: 0.79

The QOL in different disease severity patients were significant

Test-retest coefficients were calculated.

Significant differences in CLIQ scores were observed

NA

 CUCQ

0.88

ICC: 0.94

Review the literature, consultation with patients and experts

Pilot study (20 patients)

Correlation with

(1) HBI: 0.38

(2) SCCAI: 0.35

NA

Test-retest coefficients were calculated.

Correlations with EQ5D (r = 0.58), SF-12 (0.63 and 0.65)

(1) Sensitivity to change (P < 0.05)

(2)Responsiveness ratio: 0.64

(3) standardized response mean: 0.89

  1. *r: correlation coefficients; ICC: intraclass correlation coefficient; NA: not available
  2. CDAI: Crohns disease activity index; CHQ-87: Child Health Questionnaire–Child Form 87; EQ5D: EuroQol 5 dimensions; HBI: Harvey Bradshaw index; NHP: Nottingham Health Profile; PCDAI: paediatric Crohn’s disease activity index; PGWB: psychological general wellbeing; SCCAI: simple clinical colitis activity index; SCL-90: The Symptom Check-List-90; SF-12: The 12-item short-form health survey; SF-36: The 36-item short-form health survey; Tacqol: TNO-AZL Children’s Quality of life questionnaire; U-FIS: Unidimensional Fatigue Impact Scale