Scleroderma Health Assessment Questionnaire (SHAQ)

Last Updated

December 20, 2024

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Purpose

To measure disease status and changes in disease status over time in patients with systemic sclerosis (SSc).

Link to Instrument

Link to instrument

Acronym SHAQ

Area of Assessment

Bodily Functions

Assessment Type

Patient Reported Outcomes

Cost

Not Free

Cost Description

Fees may apply for use of translations. A user fee may be required and a screenshot review agreement may be signed by commercial users.

CDE Status

Not a CDE -- last searched 12/20/2024

Immune System Disorders

Scoring is fast and each question is scored 0–3 (where 0 = without difficulty and 3 = unable to do)
There are 8 categories (dressing & grooming, arising, eating, walking, hygiene, reach, grip, and usual activities) and the maximum from each category is added together and divided by the number of categories completed. Also included is a VAS for pain.
There is an added point, to a maximum of 3, in each category if aids/devices are checked as being used (if the score is already at 3 or “unable to do,” then the score cannot increase further)
The other domains (Reynaud’s phenomenon, digital ulcers, intestinal disease, breathing problems, and overall disease severity) are continuous VAS instruments that are measured with a 1-week recall period and then changed to a 0–3 scale
○ Each area is scored, and the scores are not added together for the VAS components

Number of Items

20 items on HAQ-DI plus 6 VAS

Questionnaire
Writing instrument
Computer or device for electronic version

5 minutes

Required Training

No Training

Adults

18 - 64

years

Elderly adults

65 +

years

Instrument Reviewers

Initially reviewed in 12/2024 by Andrea Adap, OTS; Lydia Delgado, OTS; Nicholas Erizo, OTS, & Indre Mickevicius, OTS under the direction of Sabrin Rizk, PhD, OTR/L, Department of Occupational Therapy, University of Illinois Chicago - University of Illinois at Chicago, Department of Occupational Therapy.

ICF Domain

Body Structure
Body Function
Activity
Participation

Measurement Domain

Activities of Daily Living
Motor
General Health
Sensory

Considerations

SHAQ is specific to scleroderma, unlike HAQ.
While scleroderma typically affects ages between 35 and 50, it can develop at any age. SHAQ applies to all individuals with scleroderma.

Standard Error of Measurement (SEM)

Systemic Sclerosis: (Genrinho et al., 2023; n = 102, mean age = 57 (12.5) years, female = 84 (82.4%), mean disease duration since diagnosis = 5.6 (6.0) years, Portuguese translation of the SHAQ, calculated SEM)

HAQ-DI: 0.119
S-HAQ Pain VAS: 10.423
S-HAQ Intestinal VAS: 8.591
S-HAQ Breathing VAS: 12.471
S-HAQ Raynaud’s VAS: 18.032
S-HAQ Finger ulcer VAS: 11.86
S-HAQ Overall disease severity VAS: 9.228

Minimal Detectable Change (MDC)

Systemic Sclerosis: (Genrinho et al., 2023; calculated MDC at 95% CI)

HAQ-DI: 0.33
S-HAQ Pain VAS: 28.89
S-HAQ Intestinal VAS: 23.81
S-HAQ Breathing VAS: 34.57
S-HAQ Raynaud’s VAS: 49.98
S-HAQ Finger ulcer VAS: 32.87
S-HAQ Overall disease severity VAS: 25.58

Normative Data

Systemic Sclerosis: (Genrinho et al., 2023; n = 102)

Most common subtype of Scleroderma: Limited Scleroderma n = 64
Most common symptoms:
- Raynaud’s phenomenon n = 96 (94.1%)
- Abnormal nail fold capillary n = 81 (79.4%)
- Sclerodactyly n = 65 (63.7)
- Telangiectasia n = 64 (62.7)

Summary data for the Scleroderma Health Assessment Questionnaire Disability Index (SHAQ) (n = 102)

SHAQ Scale	Min	Max	Mean	Std. Dev.
HAQ-DI	0.00	2.13	0.58	0.51
Pain VAS	0.00	85.0	31.7	22.8
Intestinal VAS	0.00	95.0	16.0	24.8
Breathing VAS	0.00	84.0	17.4	24.6
Raynaud’s VAS	0.00	100.0	26.2	28.8
Finger ulcer VAS	0.00	100.0	18.3	27.8
Overall disease severity VAS	0.00	90.0	35.2	25.4

HAQ-DI: Health Assessment Questionnaire-Disability Index; VAS: Visual Analog Scale

Systemic Sclerosis: (Merkel et al., 2002; n = 281, mean age = 50.4 (11.6), female = 248 (88.3%), mean disease duration since diagnosis = 8.5 (7.3) years)

Scores on SHAQ scales at baseline (mean range = 0.0-3)

SHAQ Scale	Mean	Std. Dev.
HAQ-DI	0.86	0.63
Pain VAS	1.19	0.75
Intestinal VAS	0.53	0.71
Breathing VAS	0.43	0.65
Raynaud’s VAS	1.15	0.87
Finger ulcer VAS	0.75	0.93
Overall disease severity VAS	1.17	0.77

HAQ-DI: Health Assessment Questionnaire-Disability Index; VAS: Visual Analog Scale

Systemic Sclerosis: (Steen & Medsger, 1997; n = 1,250, diffuse cutaneous involvement = 55%, mean disease duration from first symptom to first HAQ = 5.6 years)

Baseline mean disability index (HAQ-DI) scores in selected systemic sclerosis (SSc) patient subsets

Patient subsets	Mean DI*
Diffuse SSc (n = 647)	1.09
Limited SSc (n = 520)	0.72

Early diffuse SSc (<5 years duration) (n = 222)	1.22
Late diffuse SSc (>5 years duration) (n = 232)	0.96

Early limited SSc (<5 years duration) (n = 120)	0.37
Late limited SSc (>5 years duration) (n = 400)	0.76

Joint pain present (n = 505)	1.29
Joint pain absent (n = 603)	0.68

High total skin score (>20) (n = 210)	1.26
Low total skin score (<20) (n = 404)	0.62

Diffuse SSc, heart or kidney involved (n = 74)	1.36
Diffuse SSc, heart or kidney uninvolved (n = 573)	0.68

HAQ-DI: Health Assessment Questionnaire-Disability Index

*p < 0.001 for all patient subset pairs

Test/Retest Reliability

Systemic Sclerosis: (Genrinho et al., 2023)

Excellent test-retest reliability for HAQ-DI (ICC = 0.946)
Acceptable test-retest reliability for SHAQ VAS scales (ICC):
- Pain (0.791)
- Intestinal (0.880)
- Breathing (0.743)
- Finger ulcer (0.818)
- Overall disease severity (0.868)
Poor test-retest reliability for Reynaud’s VAS (ICC = 0.608)

Internal Consistency

Systemic Sclerosis: (Genrinho et al., 2023, n = 102)

Excellent: Cronbach’s alpha for the HAQ-DI = 0.866

Criterion Validity (Predictive/Concurrent)

Concurrent validity:

Systemic Sclerosis: (Genrinho et al., 2023)

Excellent concurrent validity of the HAQ-DI (all p < 0.001) with:
- EQ-5D-5L (r = -0.723)
- EQ-VAS (-0.645)
- SF-36v2 Physical Summary Measure (-0.688)
Adequate concurrent validity of the HAQ-DI with the SF-36v2 Mental Summary Measure (r = -0.337, p = 0.001) and UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract Instrument total score (r = 0.392, p < 0.001)

Systemic Sclerosis: (Smyth et al., 2003; n = 115 (75 w/limited cutaneous scleroderma, mean age = 57 (12.6), mean duration of scleroderma = 10.38 (12.8) years; 40 w/diffuse cutaneous scleroderma, mean age = 49.3 (12.8), mean duration of scleroderma = 6.5 (5.2) years)

Excellent correlation between the HAQ-DI and the UK scleroderma Functional Score (UKFS) (r = 0.9)
Excellent correlation between the visual analogue scales (VAS) for overall disease severity (r = 0.68*) and pain (r = 0.66*) with the HAQ-DI
Excellent correlation between the VAS for overall disease severity (r = 0.72*) and pain (r = 0.66*) with the UKFS

*p < 0.001

Predictive validity:

Systemic Sclerosis: (Steen & Medsger, 1997; n = 285 patients with diffuse cutaneous involvement and a symptom duration of <3 years)

Initial erythrocyte sedimentation rate and initial HAQ-DI were the most accurate tests in predicting survival

Multiple regression of first-visit features predicting death in patients with early diffuse systemic sclerosis

First-visit features	Correlation coefficient	P
Initial total skin score	0.325	0.328
Palpable tendon friction rubs	1.089	0.0005
Severe heart or kidney involvement	0.977	0.001
FVC % predicted	0.981	0.002
DLco % predicted	0.689	0.022
Serum anti-topoisomerase I antibody	0.072	0.763
Erythrocyte sedimentation rate	0.965	0.0001
HAQ Disability Index	1.118	<0.0001

FVC = forced vital capacity; DLco = diffusing capacity for carbon monoxide; HAQ = Health Assessment Questionnaire

Construct Validity

Discriminant validity:

Systemic Sclerosis: (Genrinho et al., 2023)

Significantly worse HAQ-DI scores for known groups: Males (t = 2.204, p = 0.030), Patients ≥ 65 years of age (F = 3.245, p = 0.043), and Patients with the diffuse form of systemic sclerosis (t = 2.653, p = 0.011)

Content Validity

“Content validity was tested through a clinical review involving two rheumatologists and a cognitive debriefing conducted with two panels of five patients each. Both procedures did not result in any changes to the Portuguese version (Genrinho et al., p. 5).”

Bibliography

Genrinho, I., Ferreira, P. L., Santiago, T., Carones, A., Mazeda, C., Barcelos, A., Beirão, T., Costa, F., Santos, I., Couto, M., Rato, M., Terroso, G., & Monteiro, P. (2023). Validation of the Portuguese Version of the Scleroderma Health Assessment Questionnaire. International journal of environmental research and public health, 20(22), 7062. https://doi.org/10.3390/ijerph20227062

Mapi Research Trust. (n.d.). Scleroderma Health Assessment Questionnaire. ePROVIDE. https://eprovide.mapi-trust.org/instruments/scleroderma-health-assessment-questionnaire

Merkel, P. A., Herlin, K., Martin, R. W., et al. for the Scleroderma Clinical Trials Consortium. (2002). Measuring disease activity and functional status in patients with scleroderma and Raynaud’s Phenomenon. Arthritis & Rheumatism, 46(9), 2410-2420. https://doi.org/10.1002/art.10486

Smyth, A. E., MacGregor, A. J., Mukerjee, D., Brough, G. M., Black, C. M., & Denton, C. P. (2003). A cross-sectional comparison of three self-reported functional indices in scleroderma. Rheumatology, 42(6), 732-738. https://doi.org/10.1093/rheumatology/keg145

Steen, V. D., & Medsger, T. A., Jr. (1997). The value of the Health Assessment Questionnaire and special patient-generated scales to demonstrate change in systemic sclerosis patients over time. Arthritis and Rheumatism, 40(11), 1984–1991. https://doi.org/10.1002/art.1780401110

Last Updated

Discover Careers at Shirley Ryan AbilityLab

Purpose

Link to Instrument

Area of Assessment

Assessment Type

Cost

Cost Description

CDE Status

Number of Items

Required Training

Instrument Reviewers

ICF Domain

Measurement Domain

Considerations

Standard Error of Measurement (SEM)

Minimal Detectable Change (MDC)

Normative Data

Test/Retest Reliability

Internal Consistency

Criterion Validity (Predictive/Concurrent)

Construct Validity

Content Validity

Bibliography

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