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Table 1 Published condition-specific preference-based instruments

From: A scoping review to create a framework for the steps in developing condition-specific preference-based instruments de novo or from an existing non-preference-based instrument: use of item response theory or Rasch analysis

Condition

Instrument

[references]

Dimensions

Number of health states

Method of eliciting utilities

Groups for utility elicitation

Scaling anchors

Country

Aberrant behaviour

Aberrant Behavior Checklist -Utility Index (ABC-UI)

[31, 32]

7

3^(7) = 2,187

TTO

(LT-TTO worse than dead)

UK general public

Best(1), worst (0)

UK

Asthma

Asthma Quality of Life Questionnaire- 5 Dimensions

(AQL-5D)

[33,34,35,36,37,38,39]

5

5^(5) = 3,125

TTO

UK general public

Best (1), worst (0)

UK

Bladder problems

Incontinence Utility Index (IUI)

[40, 41]

5

3^(5) = 243

TTO

UK general public

Perfect health (1), dead (0)

UK

Spain

Bladder problems

Overactive Bladder Questionnaire- 5 Dimensions (OAB-5D)

[9, 36, 42,43,44]

5

5^(5) = 3,125

TTO

UK general public

Full health (1), dead (0)

UK

USA

Cancer

European Organisation for Research and Treatment in Cancer Core Quality of Life Questionnaire – 8 Dimensions (EORTC-8D) [7, 45,46,47,48]

8

81,920

TTO

UK general public

Sri Lankan general public

Best (1), worst (0)

UK

Sri Lanka

Cancer

European Organisation for Research and Treatment in Cancer Core Quality of Life Questionnaire – 10 Dimensions

QLU-C10D

[49,50,51,52,53,54,55,56,57,58,59,60]

10

4^(10) = 1,048,576

DCE-TTO (Australia, France, Austria, Italy, and Poland)

DCE (Canada, Netherlands, Germany, UK, U.S.)

General public

Best (1), worst (0)

Australia

Netherlands

Canada

France

Germany

UK

USA

Austria, Italy, and Poland

Cancer

European Organisation for Research and Treatment in Cancer Core Quality of Life Questionnaire – Preference-Based Measure

(QLQ-PBM) [61]

8

105

TTO

Dutch general public

Best (1),worst (-1)

-1 to 0 worse than dead

Netherlands

Cancer

Functional Assessment of Cancer Therapy – 8 Dimensions (FACT-8D)

[62, 63]

8

1744 participants; 16 choice pairs; 256 observations per choice set

DCE

Patients with common cancers

Best (1), worst (0)

Australia

Cancer (breast)

Breast Utility Instrument (BUI)

[64, 65]

10

N/A

N/A

N/A No. utilities were elicited yet, so patients with breast cancer is an error.

N/A

Canada

Cerebral palsy

Cerebral Palsy-6 Dimensions

(CP-6D) [66,67,68]

6

5^(6) = 15,625

DCE-TTO

Australian general public

Best (1), worst (0)

Australia

Cystic fibrosis

Cystic Fibrosis Questionnaire-Revised-8 Dimensions (CFQ-R-8 D) [69]

8

3^(8) = 6,561

TTO

UK general public

Best (1), worse than dead (< 0)

UK

Dementia

Dementia Quality of Life-Utility (patient self-report and carer proxy-report)

DEMQOL-U

DEMQOL-Proxy-U [8, 70,71,72,73,74]

5

4

4^(5) = 1,024

4^(4) = 256

TTO

UK general public and patients

UK general public and carers

Best (1), worst (0)

UK

Dementia

Alzheimer’s Disease-5 Dimensions

(AD-5D) [75,76,77]

5

4^(5) = 1,024

DCE-TTO

BWS

Australian general public and patients with dementia & carer dyads

Best (1), worst (0)

Australia

Diabetes

Diabetes Utility Index (DUI) [78, 79]

5

4^(5) = 1024

VAS

SG

People with type 1 or 2 diabetes

Best (1), worst (0)

USA

Diabetes

Diabetes Health Profile-3 Dimensions and 5-Dimensions

(DHP-3D and

DHP-5D) [80]

3

5

33 were valued

TTO

UK general public

Best (1), worst (0)

UK

Diabetes

Health and Self-Management in Diabetes Questionnaire (HASMID)

(HASMID-8

HASMID-10)

[81, 82]

8

10

262,144 profiles

120 choice sets across 10 survey versions

DCE-TTO

UK general public and Individuals with diabetes

Unanchored and WTP estimates

UK

Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy Quality of Life-8 Dimensions (DMD-QoL-8D) [83]

8

4^(8) = 65,536

DCE-TTO

UK general public

Best (1), dead (0)

UK

Epilepsy

Epilepsy-specific Quality of Life – 6 Dimensions

(NEWQOL-6D)

[84,85,86]

6

4^(6) = 4,096

TTO

UK general public

People with epilepsy

Best (1), worst (0)

UK

Heart disease

MacNew Heart Disease Health-Related Quality of Life Instrument -7 Dimensions (MacNew) [87]

7

4^(7) = 16,384

N/A

N/A

N/A

Australia

Human immunodeficiency virus (HIV)

Preference-based HIV index (PB-HIV)

7

3^(7) = 2,187

EQ-VAS

People with HIV

Best (100), and worst (0)

Canada

Mental health

Clinical Outcomes in Routine Evaluation-Outcome Measure – 6 Dimensions

(CORE-6D) [88,89,90]

6

33 plausible health states (Rasch vignette approach)

3^(6) = 729 CORE-6D health states

TTO

UK general public

Full health (1), dead (0)

UK

Mental health

Recovering Quality of Life Utility Index

(ReQoL-UI)

[91,92,93,94]

7

66 health states valued

Each participant valued 8 health states

TTO

Lead-time TTO (states worse than dead)

Nationally representative sample from Scotland, England, Wales

Best (1), worst (0)

UK

Mobility

Mobility Quality of Life-7 Dimensions

(MobQoL-7D)

[95, 96]

7

4^(7) = 16,384

VAS

UK general public

Representative sample of people with impaired mobility

Best (100), worst (0)

UK

Multiple sclerosis

Multiple Sclerosis Impact Scale – 8 Dimensions, and -8 Dimensions patient versions

(MSIS-8D

MSIS-8D-P)

[27, 97,98,99,100]

8

4^(8) = 65,536

TTO

UK general public

People with MS

Best (1), worst (0)

UK

Multiple sclerosis

Multiple Sclerosis Impact Scale – Preference-Based Measure

(MSIS-PBM)

[61]

6

100

TTO

Dutch general public

Best (1), worst

(-1)

-1 to 0 worse than dead

Netherlands

Multiple sclerosis

Health-related quality of life in people with neurological conditions

(Neuro-QoL-Utility System (NQU)) [101, 102]

6

59 health states

47 single-attribute states

6 corner states

3 marker states: worst, best, dead

SG

General public sample, and patients with MS

Best (1), worst (0)

UK

Multiple sclerosis

Preference-Based Multiple Sclerosis Index (P-PBMSI)

[103,104,105,106]

5

3^(5) = 243

SG

RS

People with MS

Best (1), worst (0)

Canada

Myelofibrosis

Myelofibrosis-8 Dimensions

(MF-8D) [107]

8

2560

TTO

UK general public

Best (1), worst (0)

UK

Obesity

Weight-specific Adolescent Instrument for Economic-Evaluation (WAITe) [108,109,110]

5

7^(5) = 16,807

TTO

UK general public

Best (1), worst (0)

UK

Obesity

Preference-Based Index of Weight-Related Quality of Life (PBI-WRQL) [111]

7

3^(7) = 2,187

EQ-VAS

Patients

Best (100), worst (0)

Canada

Oral health

Caries Impacts and Experiences Questionnaire for Children Utility version

(CARIES-QC-U)

[112, 113]

4

3^(5) = 243

DCE-TTO

BWS

Adolescents and adults from the general public

Best (1), worst (0)

UK

Oral health

Early Childhood Oral Health Impact Scale-4 Dimensions (ECOHIS-4D) [114, 115]

4

3^(4) = 81

DCE-TTO

Australian general public

Best (1), worst (0)

Australia

Palliative care

Palliative Care Outcome Scale Descriptive System (POS-E) [116]

3

3^(7) = 2187

N/A

N/A

N/A

UK

Rheumatoid arthritis

Multiattribute Health Outcome Measure for Rheumatoid Arthritis

(MHOM RA)

[117]

6

4^(6) = 40,096

TTO (general health preference)

Patients with rheumatoid arthritis

Best (1), worst (0)

UK

Rheumatoid arthritis

Health Assessment Questionnaire – Preference-Based Measure

(HAQ-PBM) [61]

5

56

TTO

Dutch general public

Best (1), worst (0)

Netherlands

Vision

Vision Quality of Life Index

(Vis-QoL) [118,119,120,121,122,123,124]

6

5^(6)

 = 15,625

TTO

and

RS (intermediate item responses)

Patients with visual impairment (Canada)

Patients with diabetic retinopathy, diabetic macular edema, and keratoconus (Australia)

Patients with visual impairment (India)

Best (1), dead (0),

States worse than dead -0.25

Canada

Australia

India

Vision

Visual Function Questionnaire – Utility Index

(VFQ-UI)

[125,126,127,128,129,130]

6

5^(6) = 15,625

TTO

General public from Australia, Canada, UK, USA

Best (1), worst (0)

Australia, Canada,

UK,

USA

  1. Abbreviations: TTO Time trade-off, DCE-TTO Discrete-choice experiment, time-trade-off, LT-TTO Lead time-time trade-off, BWS Best worst scaling, RS Rating scale, VAS Visual analogue scale, UK United Kingdom, USA United States of America