Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

291

Table 11.1 Patient-reported outcomes used in s ystemic sclerosis a

Score

Publication

year Authors Measures

Specifi c

to SSc?

Health Assessment

Questionnaire (HAQ) and

HAQ-Disability Index

(HAQ-DI) [ 27 ]

1980 Fries et al. Health-related quality of

life (HRQoL) and

functional status

Borg Dyspnea Index [ 86 ] 1982 Borg et al. Dyspnea

Baseline Dyspnea Index

(BDI) and Transition

Dyspnea Index (TDI) [ 84 ]

1984 Mahler et al. Dyspnea

EuroQol-5D (EQ-5D)

[ 35 ]

1990 The EuroQol

Group

HRQoL and overall

health

Short-Form Health

Survey (SF-36) [ 44 ]

1992 Ware et al. HRQoL

Cochin Hand Function

Scale/Duruoz Hand Index

[ 66 ]

1996 Duruoz et al. Functional status of the

hands

Disabilities of the Arm,

Shoulder, and Hand

(DASH) [ 72 ]

1996 Hudak et al. Functional status of the

upper extremities

SSc Health Assessment

Questionnaire (SHAQ)

[ 32 ]

1997 Steen and

Medsger

HRQoL, functional

status, GI, lung, and

vascular disease, digital

ulcers, pain, and overall

disease severity

ABILHAND [ 76 ] 1998 Penta et al. Functional status of the

hands

Michigan Hand

Questionnaire [ 78 ]

1998 Chung et al. Functional status of the

hands

UK SSc Functional Score

(UKFS) [ 52 ]

1998 Silman et al. Functional assessment

Short Form-6D (SF-6D)

[ 49 ]

2002 Brazier et al. HRQoL

Raynaud’s Condition

Score [ 30 ]

2002 Merkel et al. Frequency, duration, and

severity and impact of

RP attacks

Functional Assessment of

Chronic Illness Therapy

(FACIT) [ 99 ]

2003 Webster

et al.

HRQoL in chronic

diseases (symptom—and

disease-specifi c

measures exist)

Cambridge Pulmonary

Hypertension Outcome

Review (CAMPHOR) [ 91 ]

2006 McKenna

et al.

HRQoL measure specifi c

to PAH

Mouth Handicap Scale in

Systemic Sclerosis

(MHISS) [ 79 ]

2007 Mouthon

et al.

Mouth disability in SSc

(continued)

11 PROMs for Systemic Sclerosis (Scleroderma)