Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

292

The disability index section of the HAQ (HAQ-DI) measures patient-reported
function in eight domains (dressing and grooming, eating, arising, walking, hygiene,
grip, reach, and other common daily activities), and is one of the most widely used
quality of life and disability measures in SSc [ 27 , 28 ]. Originally designed for rheu-
matoid arthritis (RA), it has now been applied to multiple diseases.
The HAQ is inexpensive and scoring is quick and easy. Scores for each item
ranges from 0 to 3, with the latter representing greater disability. If a device or aid
is used for a specifi c category, an extra point is added to a maximum of three per
domain in the usual scoring system. The scorer sums the disability score from each
category and divides by the number of completed categories [ 27 , 28 ]. The HAQ can
also include a visual analog scale (VAS) for pain (discussed in the next paragraph)
[ 29 ]. A review by Johnson et al. showed that the HAQ-DI appears reliable, respon-
sive to change, and has good concurrent, construct, and predictive validity [ 28 – 30 ].
Furthermore, HAQ-DI scores are predictive of mortality in early diffuse SSc [ 31 ,
32 ] and low scores at baseline indicate a higher chance of an improvement in skin
score over the next year in early dcSSc [ 33 ].
Although the HAQ-DI is used extensively in research and clinical practice, it
may be outdated, not applicable to all patients (e.g., one domain assesses ability to
open a milk carton) and seems to primarily focus on musculoskeletal-related dis-
ability [ 28 ]. There may also be concerns that adding points for the use of assistive
devices overestimates disability and they should not be counted [ 34 ].

Table 11.1 (continued)

Score

Publication

year Authors Measures

Specifi c

to SSc?

Patient-Reported

Outcomes Measurement

Information System

(PROMIS) [ 98 ]

2007 National

Institute of

Health (Cella

et al.)

Health status and

symptoms in chronic

conditions

SSc Gastrointestinal Tract

1.0 (SSc-GIT 1.0) [ 59 ]

2007 Khanna et al. Gastrointestinal disease

in scleroderma

University of California,

Los Angeles, Scleroderma

Clinical Trials

Consortium

Gastrointestinal Scale

GIT 2.0 (UCLA SCTC

GIT 2.0) [ 60 ]

2009 Khanna et al. Refl ux, diarrhea, fecal

incontinence, distension

and bloating, emotional

well-being, constipation,

and social functioning

Symptom Burden Index

(SBI) [ 51 ]

2010 Kallen et al. Refl ux, diarrhea, fecal
incontinence, distension
and bloating, emotional
well-being, constipation,
and social functioning
Global Assessments Disease or symptom
activity, severity, and/or
damage
a These are examples and not meant to include all possible patient-reported outcome measures in
SSc studies

R.E. Pellar et al.