Appendix 1: EQ-5D-3L Descriptive System - Springer978-94-007-5158-3/1.pdf · Appendix 1: EQ-5D-3L...

Appendix 1: EQ-5D-3L Descriptive System

Mobility

I have no problems in walking about

I have some problems in walking about

I am confined to bed

Self-care

I have no problems with self-care

I have some problems washing or dressing myself

I am unable to wash or dress myself

Usual Activities (e.g., work, study, housework,family or leisure activities)

I have no problems with performing my usual activities

I have some problems with performing my usual activities

I am unable to perform my usual activities

Pain/Discomfort

I have no pain or discomfort

I have moderate pain or discomfort

I have extreme pain or discomfort

R. Brooks, The EuroQol Group after 25 years, DOI 10.1007/978-94-007-5158-3,# Springer Science+Business Media Dordrecht 2013

249

Anxiety/Depression

I am not anxious or depressed

I am moderately anxious or depressed

I am extremely anxious or depressed

250 Appendix 1: EQ-5D-3L Descriptive System

Appendix 2: EQ-5D-5L Descriptive System

Mobility

I have no problems in walking about

I have slight problems in walking about

I have moderate problems in walking about

I have severe problems in walking about

I am unable to walk about

Self-care

I have no problems washing or dressing myself

I have slight problems washing or dressing myself

I have moderate problems washing or dressing myself

I have severe problems washing or dressing myself

I am unable to wash or dress myself

Usual Activities (e.g., work, study, housework,family or leisure activities)

I have no problems doing my usual activities

I have slight problems doing my usual activities

I have moderate problems doing my usual activities

I have severe problems doing my usual activities

I am unable to do my usual activities

251

Pain/Discomfort

I have no pain or discomfort

I have slight pain or discomfort

I have moderate pain or discomfort

I have severe pain or discomfort

I have extreme pain or discomfort

Anxiety/Depression

I am not anxious or depressed

I am slightly anxious or depressed

I am moderately anxious or depressed

I am severely anxious or depressed

I am extremely anxious or depressed

252 Appendix 2: EQ-5D-5L Descriptive System

Appendix 3: EQ-5D-3L Official Language

Versions

253

Afrikaans (South Africa)

Arabic (Algeria, Jordan, Kuwait, Saudi Arabia, Tunisia, UAE)

Bangla (Bangladesh)

Bengali (India)

Bulgarian (Bulgaria)

Catalan (Spain)

Chinese (Simplified) (China, Malaysia, Singapore)

Chinese (Traditional) (Hong Kong, Taiwan)

Croatian (Croatia)

Czech (Czech republic)

Danish (Denmark)

Dutch (Belgium, the Netherlands)

English (Australia, Canada, Hong Kong, India, Malaysia, Malta, New Zealand, Philippines, UK

(also validated for Ireland), Singapore, South Africa, USA)

Estonian (Estonia)

Finnish (Finland)

French (Algeria, Belgium, France, Canada, Switzerland, Tunisia)

Georgian (Georgia)

German (Germany, Austria, Switzerland)

Greek (Greece)

Gujarati (India)

Hebrew (Israel)

Hindi (India)

Hungarian (Hungary)

Icelandic (Iceland)

Indonesian (Indonesia)

Italian (Italy)

Japanese (Japan)

Kannada (India)

Latvian (Latvia)

Lithuanian (Lithuania)

Malay (Malaysia)

(continued)

(continued)

Malayalam (India)

Maltese (Malta)

Maori (New Zealand)

Marathi (India)

Norwegian (Norway)

Polish (Poland)

Portuguese (Brazil, Portugal)

Punjabi (India)

Romanian (Romania)

Russian (Israel, Latvia, Russia, Ukraine)

Serbian (Serbia)

Slovak (Slovakia)

Slovenian (Slovenia)

Spanish (Argentina, Chile, Colombia, Costa Rica, Dominican Republic, Ecuador, Guatemala,

Mexico, Panama, Peru, Puerto Rico, Spain, Uruguay, USA, Venezuela

Swedish (Finland, Sweden)

Tamil (India)

Telugu (India)

Thai (Thailand)

Turkish (Turkey)

Ukrainian (Ukraine)

Urdu (India, Pakistan)

Vietnamese (Vietnam)

Zulu (South Africa)

Latest update: April 2012

254 Appendix 3: EQ-5D-3L Official Language Versions

Appendix 4: EQ-5D-5L Language Versions

255

Afrikaans (South Africa)

Arabic (Israel)

Bengali (India)

Cebuano (Philippines)

Chinese (Simplified) (China, Malaysia, Singapore)

Chinese (Traditional) (Taiwan)

Czech (Czech Republic)

Danish (Denmark)


English (Australia, Canada, India, Malaysia, New Zealand, Singapore, South Africa, UK, USA)

Estonian (Estonia)

Finnish (Finland)

French (Belgium, Canada, France, Switzerland)

German (Austria, Germany, Switzerland)

Greek (Greece)

Gujarati (India)

Hebrew (Israel)

Hindi (India)

Hungarian (Hungary)

Italian (Italy, Switzerland)

Japanese (Japan)

Kannada (India)

Korean (Korea)

Latvian (Latvia)

Lithuanian (Lithuanian)

Malay (Malaysia, Singapore)

Malayalam (India)

Marathi (India)

Norwegian (Norway)

Polish (Poland)

Portuguese (Brazil, Portugal)

Romanian (Romania)

(continued)

(continued)

Russian (Estonia, Israel, Latvia, Lithuania, Russia, Ukraine)

Serbian (Serbia)

Slovak (Slovakia)

Spanish (Argentina, Chile, Mexico, Peru, Puerto Rico, Spain, US)

Swedish (Finland, Sweden)

Tagalog (Philippines)

Tamil (India, Singapore)

Telugu (India)

Thai (Thailand)

Turkish (Turkey)

Ukrainian (Ukraine)

Urdu (India)

Xhosa (South Africa)

Latest update: April 2012

256 Appendix 4: EQ-5D-5L Language Versions

Appendix 5: EQ-5D-Y Language Versions


English (Canada, UK)

French (Belgium)

German (Austria, Germany)

Italian (Italy)

Polish (Poland)

Spanish (Spain)

Swedish (Sweden)

Xhosa (South Africa)

Latest update: February 2012

257

Appendix 6: Present EuroQol Members

Liv Ariane Augestad Claire Gudex Kim Rand-Hendriksen

Xavier Badia Narcis Gusi Ulrike Ravens-Sieberer

Henry Bailey Michael Herdman Luciana Scalone

Stefan Bj€ork Bas Janssen Kristina Secnik Boye

Gouke Bonsel Jennifer Jelsma Caroline Selai

John Brazier Jeff Johnson James Shaw

Richard Brooks Paul Kind Harri Sintonen

Stirling Bryan Thomas Kohlmann Caitlyn Solem

Kristina Burstr€om Maria Koltowska-H€aggstr€om Barbara Spady

Jan Busschbach Paul Krabbe Peep Stalmeier

Martin Buxton Anna Krabbe Lugner Knut Stavem

Juan Casabes Leida Lamers Elly Stolk

Guilia Cavrini Andrew Lloyd Sun Sun

Julie Chevalier Louise Longworth Agota Szende

Ling-Hsiang Chuang Erica Lubetkin Sally Thompson

Johannes Clouth Nan Luo Carlo Tomasetto

Stephen Coons Lorenzo Mantovani Aki Tsuchiya

Benjamin Craig Arto Ohinmaa Ben van Hout

Frank de Charro Mark Oppe Nora Wille

Gerard de Pouvourville David Parkin Feng Xie

Sarah Derrett Simon Pickard John Yfantopoulos

Nancy Devlin Valentina Prevolnik Rupel Victor Zarate

Ann-Charlotte Egmar Rosalind Rabin

Dominik Golicki Juan Manuel Ramos-Goni

Wofgang Greiner

Ning Yan Gu

259

Appendix 7: Attendance at the Early Meetings

Meeting Name Commentary

1st Rotterdam May

1987

Martin Buxton, Joy Ashby{, Frank de

Charro, Paul van der Maas, Ben

van Hout, Gouke Bonsel, Yvonne

Spronk, Ronald Bergman, Carole

Butler, Bjorn Lindgren, Ulf Persson,

Alan Williams{, Paul Kind, Claire

Gudex

Yvonne Spronk and Ronald

Bergman did not re-attend.

Carole Butler left after 6th.

2nd Brunel

October 1987

New: Markku Pekurinen, Harri

Sintonen, Jeremy Hurst, Rosalind

Rabin, Rachel Rosser{, Julia

Rushby

Jeremy Hurst left after 5th

3rd Brunel January

1988

New: Richard Allison Richard Allison left after 6th

4th Brunel July

1988

New: Erik Nord, Richard Brooks

5th Brunel July

1989

New: Moira O’Hanlon, Stefan Bj€ork,Stefan Jendteg, Joanna Mulvey,

Marie-Louise Essink-Bot, Jenny

Morris

Only appearances: Joanna

Mulvey, Jenny Morris, Stefan

Jendteg

6th Rotterdam

January 1990

New: Emile van Lin, Caroline Selai Only appearance: Emile van Lin.

7th York

September

1990

New: Jan van Busschbach, David

Parkin, Henry Neuburger

Henry Neuburger attended Lund

1991, but not thereafter.

Notes: Names in bold remain members 2012{Deceased

261

Appendix 8: Individuals Listed in Health PolicyArticle 1990

Martin Buxton, Moira O’Hanlon, Julia Rushby, Markku Pekurinen, Harri Sintonen, Stefan

Bj€ork, Bj€orn Lindgren, Ulf Persson, Richard Brooks, Erik Nord, Richard Allison, Carole Butler,

Rosalind Rabin, Rachel Rosser{, Caroline Selai, Gouke Bonsel, Marie Louise Essink-Bot, Ben

van Hout, Frank de Charro, Claire Gudex, Paul Kind, Alan Williams{.


Bj€orn Lindgren and Ulf Persson left after Lund meeting 1991

263

Appendix 9: Membership 1995 Onwards

265

Year Membership Commentary

1995 Xavier Badia, Stefan Bj€ork, Gouke

Bonsel, Richard Brooks, Jan van

Busschbach, Martin Buxton, Juan

Cabases, Frank de Charro, Paul

Dolan, Marie Louise Essink-Bot, Julia

Fox-Rushby, Idoia Gaminde,

Wolfgang Greiner, Claire Gudex,

Ben van Hout, Paul Kind, Paul

Krabbe, Erik Nord, Moira O’Hanlon,

Arto Ohinmaa, David Parkin Jose

Luis Pinto, Rosalind Rabin, Rachel

Rosser{, Caroline Selai, Harri

Sintonen, Alan Williams{, Ardine de

Wit, John Yfantopoulos

Associate Membership: Markku

Pekurinen, Paul van der Maas,

Matthias Graf vd Schulenburg, Frans

Rutten

Individual membership was instituted at

Barcelona Plenary Meeting.

In 1992 Paul Krabbe had joined as a

member of the Dutch group, Paul

Dolan from York, and Pontus Roos

from Sweden. In 1993 Xavier Badia

was the first from Spain, Arto

Ohinmaa joined from Finland, and

Frans Rutten attended from the

Netherlands. Jose Luis Pinto joined

from Spain in 1994.

..

1996 New: Jeffrey Johnson, Stephen Coons,

Pontus Roos{Moira O’Hanlon formally retired from

Group.

1997 New: Michael Herdman, Nancy Mayo

1998 New: Naoki Ikegami, Montserrat Roset,

Knut Stavem

1999 New: Stirling Bryan, Wendy Coucill,

Barbara Conner Spady, Andrew

Lloyd, Aki Tsuchiya, Martin

Wildman

Left: Jose Luis Pinto.

2000 New: Nancy Devlin, Marthe Gold, Paul

Hansen, Jenny Jelsma, Louise

Longworth, Sue Macran, Madhav

Namjoshi, Simon Pickard, Valentina

Prevolnik Rupel, Agote Szende,

Sally Thompson

(continued)

(continued)

Year Membership Commentary

2001 New: Kristina Burstr€om, Paulo Campos,

Sarah Derrett, Cristina Granja,

Narcıs Gusi, Thomas Kohlmann,

Erica Lubetkin, Anna Norinder,

Matekja Rebolj, Tommy Oberg{,Ulrika Oberg, Kjeld Møller Pedersen

2002 Left: Ardine de Wit

2003 New: Nan Luo

2004 New: Leida Lamers, Kristina Secnik,

James Shaw

Membership lapsed: Paulo Campos, Paul

Dolan, Julia Fox-Rushby, Christina

Granja, Paul Hansen, Naoki Ikegami,

Kjeld Moeller Pedersen, Montserrat

Roset, Martin Wildman. Associate

members: Paul van der Maas, Markku

Pekurinen, Frans Rutten and J.-

Matthias Graf v.d.Schulenburg.

2005 New: Guilia Cavrini, Luciana Scalone

2006 New: Bas Janssen, Barbara Pacelli, PeepStalmeier

2007 New: Nuria Lara, Mark Oppe, Maria

Koltowska-H€aggstr€om, Nora Wille

Membership lapsed: Madhav Namjoshi,

Nancy Mayo.

2008 New: Ling-Hsiang Chuang, Johannes

Clouth, Benjamin Craig, Ann-

Charlotte Egmar, Ulrike Ravens-

Sieberer, Sun Sun, Carlo Tomasetto,

Victor Zarate

Membership lapsed: Marthe Gold.

2009 New: Lorenzo Mantovani, Elly Stolk.

2010 New: Henry Bailey, John Brazier, Julie

Chevalier, Dominik Golicki, Ning

Yan Gu, Gerard de Pouvourville,

Caitlyn Solem (Wilke), Feng Xie

Membership lapsed: Susan Macran van

Hout, Ulrika Oberg.

2011 Membership lapsed: Idoia Gaminde,

Nuria Lara, Barbara Pacelli, Matejka

Rebolj.

2012 New: Juan Manuel Ramos-Goni, Kim

Rand Hendriksen, Liv Ariane

Augestad


266 Appendix 9: Membership 1995 Onwards

Appendix 10: Child-Related Papers

Method Papers

Burstr€om, K., Egmar, A.-C., Lugner, A., Eriksson, M., Svartengren, M. (2011):

A Swedish child-friendly pilot version of the EQ-5D instrument - the develop-

ment process. European Journal of Public Health; 21(2):171–7

Gusi, N., Badıa, X., Herdman, M., Olivares, P.R. (2009):Translation and cultural

adaptation of the Spanish version of EQ-5D-Y questionnaire for children and

adolescents. Atencionprimaria; 41(1): 19–23.

Ungar, W. J. (2011): Challenges in health state valuation in pediatric economic

evaluation: are QALYs contraindicated? Pharmacoeconomics; 29(8): 641-52.

Wille, N., Badia, X., Bonsel, G., Burstr€om, K., Cavrini, G., Devlin, N., Egmar, A.-C.,

Greiner, W., Gusi, N., Herdman, M., Jelsma, J., Kind, P., Scalone, L., Ravens-

Sieberer, U. (2010): Development of the EQ-5D-Y: a child-friendly version of

the EQ-5D. Quality of Life Research; 19(6):887–97.

Validation Studies

Eidt-Koch, D., Mittendorf, T., Greiner, W. (2009): Cross-sectional validity of the

EQ-5D-Y as a generic health outcome instrument in children and adolescents

with cystic fibrosis in Germany. BMC Pediatrics; 9:55.

Ravens-Sieberer, U., Wille, N., Badia, X., Bonsel, G., Burstrom, K., Cavrini, G.,

Devlin, N., Egmar, A.-C., Gusi, N., Herdman, M., Jelsma, J., Kind, P., Olivares

P.R., Scalone, L., Greiner, W. (2010): Feasibility, reliability, and validity of the

EQ-5D-Y: results from a multinational study. Quality of Life Research; 19(6):

887–97.

267

Application of EQ-5D-Y

Boyle, S. E., Jones, G. L., Walters, S. J. (2010): Physical activity, quality of life,

weight status and diet in adolescents. Quality of Life Research; 19(7): 943-54.

Burstr€om, K., Svartengren, M., Egmar, A.-C. (2011): Testing a Swedish child-

friendly pilot version of the EQ-5D instrument – initial results. European Journal

of Public Health; 21(2): 178-83.

Jelsma, J. (2010): A comparison of the performance of the EQ-5D and the

EQ-5D-Y health-related quality of life instruments in South African children.

International Journal of Rehabilitation Research; 33(2):172-7.

Jelsma, J., Ramma, L. (2010): How do children at special schools and their parents

perceive their HRQoL compared to children at open schools? Health and Quality

of Life Outcomes; 8:72.

Nordyke, K., Norstr€om, F., Lindholm, L., Carlsson, A., Danielsson, L., Emmelin,

M., H€ogberg, L., Karlsson, E., Ivarsson, A. (2011): Health-related quality-of-lifein children with coeliac disease, measured prior to receiving their diagnosis

through screening. Journal of Medical Screening; 18(4):187-92.

Oluboyede, Y., Tubeuf, S., McCabe, C. (2011): Measuring health outcomes of

adolescents: report from a pilot study. European Journal of Health Economics;

online first, July 2011.

Willems, D. C., Joore, M. A., Nieman, F. H., Severens, J. L., Wouters, E. F.,

Hendriks, J. J. (2009): Using EQ-5D in children with asthma, rheumatic

disorders, diabetes, and speech/language and/or hearing disorders. International

Journal of Technology Assessment in Health Care; 25(3): 391-9.

Wu, X.Y., Ohinmaa, A., Veugelers, P.J. (2012): Diet quality, physical activity,

body weight and health-related quality of life among grade 5 students in Canada.

Public Health Nutrition; 15(1): 75-81.

Wu, X. Y., Ohinmaa, A., Veugelers, P. J. (2010): Sociodemographic and neighbor-

hood determinants of health-related quality of life among grade-five students in

Canada. Quality of Life Research; 19(7):969-76.

Burstr€om K., Egmar A-C., Sun S., Eriksson M., Svartengren M. (2010): Utveckling

av EQ-5D-Y – en barnv€anlig version av det h€alsorelaterade livskvalitetsin-

strumentet EQ-5D. (Development of EQ-5D – a child-friendly version of the

health-related quality of life instrument EQ-5D.) Stockholm: Karolinska

Institutets Folkh€alsoakademi, 2010. Rapport 2010:22. (Karolinska Institutet

School of Public Health, 2010. Report 2010:22.) (In Swedish).

Review

Noyes, J., Edwards, R.T. (2011): EQ-5D for the assessment of health-related

quality of life and resource allocation in children. A systematic methodological

review. Value in Health; 14(8):1117-29.

268 Appendix 10: Child-Related Papers

Further Publication

Scalone, L., Tomasetto, C., Matteucci, M.C., Selleri, P., Broccoli, S., Pacelli, B.,

Cavrini, G. (2011): Assessing quality of life in children and adolescents: Devel-

opment and validation of the Italian version of the EQ-5D-Y. Italian Journal of

Public Health; 8(4): 331-341.

Appendix 10: Child-Related Papers 269

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282 References

Index

AAgency for Healthcare and Quality

(AHRQ), 102

American Rheumatism Association, 1

Application papers

Barcelona Plenary Meeting (1995), 132

Brunel PlenaryMeeting (1994), 132

child-centred papers, 135

clinical areas, 142

Copenhagen meeting, 2001, 134

CSPTF activities, 140

disease areas programme, 136, 138

EQ-net book, 136

EuroQol Group, reviews, 141

Hannover Scientific meeting, 1998, 132, 134

3L and 5L versions, 139

Oslo meeting, 136–137

Pamplona Scientific Plenary meeting,

2000, 134

programmes and settings, 142, 143

registrations, 142–144

Rotterdam Plenary Meeting (1993), 131

Sitges Scientific Plenary meeting, 199, 134

31st meeting, Paris (September 2009), 140

task force’s activities, 137

Attention deficit hyperactive disorder

(ADHD), 205

BBiomed EQ-net project

annual activity report, 153

EQ-5D, 154

exploitation plans, 153

project milestones, 152

TVA, 152

CChild-Friendly TF (CFTF), 204

Common Core Group terminology, 16

Condition specific task force (CSPTF)

bolt-ons, 233

DimExs, 234

non-EQ members, 234–235

remarks, 236

Contract research organisations (CROs), 163

DDevelopment Electronic Valuation

Technology (DEVT), 118

Digital task force (DTF)

action points, 226

approval procedures, 226

ClinPhone contract, 225

Clinphone plus reaction, 224

EEP, 223

invivodata, 226

necessary changes, 225

nomenclature, 225

computer interrogation, 222–223

VAS, 225–226

Discrete choice experiments (DCE), 80, 103

EEQ-5D descriptive system

Barcelona Plenary Meeting 1995, 44

Barcelona Plenary Meeting September

2006, 56

Baveno Plenary Meeting September 2008,

57–58

Brunel Plenary Meeting 1994, 43


283

EQ-5D descriptive system (cont.)Chicago Plenary Meeting 2004, 49

Copenhagen Plenary Meeting September

2001, 48

development

from 2009, 63–64

dimension selection, 38–39

energy/vitality, 41

EuroQol classification, 42

family and leisure activities, 41

health states 5D version, 40

language, 39

levels, 39

objectives, 38

requirements, 38

early meetings, attendance, 261

Eighth Executive Committee Meeting May

2004, 49

Eleventh Executive Committee Meeting

February 2005

EQ-5D product development, 50

Funding 2005, proposals, 51

labelling, 51

standardised EQ-5D, proposals

to change, 51

EQ-5D-3L, 249–250

EQ-5D-5L, 251–252

Final Report of the 5L/Labelling Task

Force to the Executive Committee,

62

First EQ-5D Increased Level Task Force

Meeting November 2005, 53–54

Fourteenth Executive Committee Meeting

February 2006, 54

Fourth Labelling Sub-task Force Meeting

September 2006, 56

Hannover Plenary Meeting 1998, 46, 47

Helsinki Plenary Meeting 1992, 42–43

Labelling Sub-task Force Consensus Report

dimensions, 59

levels and labels, 59–61

progress and process-October 2008,

58–59

Liaison Officers Meeting April 1993, 43

Lund Plenary Meeting 1991, 42

Netherlands Plenary Meeting September

2007, 56–57

Oslo Plenary Meeting 1996, 44–45

Oslo Plenary Meeting 2005, 51–52

Rotterdam Plenary Meeting 1993, 43


Second Increased Level Task Force

Meeting March 2006, 54–55

Sitges Plenary Meeting 1999, 46

Sixteenth Executive Committee Meeting

June 2006, 55–56

Subsequent Meetings of the Task Force, 56

Tenth Executive Committee Meeting

Chicago September 2004

EQ-5D 5-Level Version, 49–50

standardised EQ-5D, proposals to

change, 50

Third Labelling Sub-task Force Meeting

May 2006, 55

Twelfth Executive Committee Meeting

Oslo September 2005, 52

Twenty-Fourth Executive Committee

Meeting April 2008, 57

Twenty-Second Executive Committee

Meeting December 2007, 57

Twenty-Seventh Executive Committee

Meeting November 2008, 61–62

York Plenary Meeting 2002, 48–49

EQ-net project

cognitive/conceptual problems, 74

EQ-5D concepts, 72

European languages, 73

evident variations, 72

further research, 72–73

health outcomes assessment, 74

interview process, 73

language versions, 73

quality control, 73

EuroQol electronic programme (EEP), 223

EuroQol Group

current Group membership, 259

external environment, 247–248

1990 Health Policy article, members, 263

membership changes, 265–266

strategy, 246–247

strengths, 245–246

EuroQol instrument, early meetings

EuroQolus exercise, 32–34

Fifth meeting, July 1989, 22

being dead treatment, 24

commentary, 25

data exchange, 24

data report, 23

descriptors presentation, 23–24

development programme, publications

and membership, 24–25

EuroQol measure, 22–23

scaling method, validity and response

rates, 23

socio-demographic data, 24

First meeting, May 1987, 14–16

284 Index

Fourth meeting, July 1988

extended core, 18

health states, 21

protocol, core data, 20–21

restricted core, 18

selected core states, 22

thermometer, 19

valuation task, 18

medical and related interventions, 13

multidisciplinary collaboration, 14

reductionist approach, 14

Second meeting, October 1987, 16, 17

Seventh meeting, September 1990

data handling arrangements, 30

experiments, 30

finance, 32

membership, 31

objectives, 28

organisational matters, 31

presentation, 29

publications, 30

revised descriptors, 28–29

Sixth meeting, January 1990

being dead treatment, 26

descriptors, 26

future meetings, 27–28

multi-stage vs. composite single stage

valuations, 26

objectives, 25

organisational and procedural

matters, 27

publications, 27

thermometer, 27

Third meeting, January 1988, 16–18

EuroQol organisation and administration

Barcelona Plenary Meeting (1995),

148–151

Biomed EQ-net project

annual activity report, 153

EQ-5D, 154

exploitation plans, 153

project milestones, 152

TVA, 152

Brunel Plenary Meeting (1994), 148–149

copyright and legal issues

EQ-5D-3L, 163

EQ-5D language, 162–163

EQ-5D translations, 162

Group products, 163–164

recommendations, 162

data archiving, 193–195

Executive Committee

by-laws and rules, 156, 158

Dutch Trade Register, 158–159

election procedures, 156, 157

legal advice, 156

membership, 155

research grant applications, 160–161

role and functioning, 155

task force managers, 159

finance

Barcelona Association Meeting,

1995, 165

Bled Association Meeting, 2003, 167

Brunel Plenary Meeting, 1994, 165

Chicago Association Meeting,

2004, 167

Copenhagen Association Meeting,

200, 166–167

EQ funded projects, 168–169

Hannover Association Meeting,

1998, 165

large scale users, 170

Liaison Officers Meeting, April 1993,

164

5L valuation, 170

Oslo Association Meeting, 1996, 165

Pamplona Association Meeting,

2000, 166

Paris Association Meeting, September

2009, 170

Rotterdam Plenary meeting, 1993, 164

Scientific Plenary meeting, 176

Sitges Association Meeting, 1999,

165–166

soaring activities, 171

usage groups, 169–170

York Association Meeting, 2002, 167

formative years 1987–1991, 145–146

Helsinki (1992), Plenary Meeting,

146–147

Lund (1991), Plenary Meeting, 146–147

membership

Barcelona Plenary Meeting (1995),

177–178

benefits, 179–180

Copenhagen Board Meeting (2001),

179–180

EuroQol group membership, 178, 179

invitation, 185

MRG feedback, 183–184

option 1, 182

Pamplona Association Meeting (2000),

178

43rd meeting, Oxford (September

2011), 184

Index 285

review report (January 2010), 181

17th meeting, Barcelona (September

2006), 181

10th meeting, Chicago (September

2004), 180

York Association Meeting (2002), 178

Plenary meeting arrangements

Brunel Association Meeting, 1994, 171

Copenhagen Association Meeting,

2001, 172

scientific meetings, 172

York Association Meeting, 2002,

172–173

publications, 192–193

publicity, 190–192

Rotterdam Plenary Meeting (1993), 148

user interaction

EQ-5D-3L descriptive system, 189

EQ-5D Use, Canada, 190

EQ VAS, 189–190

refining and testing, 188

31st meeting, Paris (September 2009),

188

26th meeting, Baveno (September

2008), 188

UK developments, 187

HHealth Economists’ Study Group (HESG), 2

Health-related quality of life (HRQoL)

Business Management, 4

decision-making, 3

disease-specific measures, 1

EuroQol family

copyright policy, 8

Group’s activities, 6

injury review, 10

membership rules, 11

modelling and valuation, 7

Plenary Meetings, 6

publications, 11

scientific contributions, 9

socio-economic aspects, 9

Translation Committee, 7

Xhosa language version, 10

Youth Task Force, 8

language versions, instrument, 3

narrative, 4–5

preference-based valuations, 2

pre-history, 2–3

sources and references, 5

IInternational Society for Pharmacoeconomics

and Outcomes Research (ISPOR), 5

LLanguage versions

EQ-5D-3L, 253–254

EQ-5D-5L, 255–256

EQ-5D-Y, 257

Liaison Panel, 31

Likert scaling, 80

MMagnitude estimation, 80

Measurement andValuation ofHealth (MVH), 7

Membership review group (MRG), 181

NNational Institute for Clinical Excellence

(NICE), 101

Nottingham Health Profile (NHP), 15

Novo Nordisk translations, 69–70

PPaired comparisons, 80

Patient reported outcome measures (PROMs),

170

Person trade-off (PTO), 80

Population health task force (PHTF)

First Meeting November 2007, 237–239

Fourth Meeting Athens September 2010,

243–244

research areas, 243

Second Meeting Baveno September 2008,

239

suggestions, 243–244

Third Meeting Paris September 2009,

240–242

Product development strategy

age ranges, 212–213

Baveno September 2008, 227

Cheerleader project applications, 198

dimensions, 214–215

electronic versions, 231–232

EQ-5D 5-level field testing, 235–236

Executive Committee

12th Meeting Oslo, September 2005,

201

286 Index

17th Meeting Barcelona, September

2006, 202

21st Meeting The Hague, September

2007, 203

26th Meeting Baveno, September 2008,

203–204

5L, expansion, 216

memorandum

EuroQol instrument, 199

potential EQ-5D products, 200

research priorities, 202

papers and publications

adult vs. child versions, 220

EQ-5D-Y, 221–222

Nora Wille and Ulrike Ravens-Sieberer,

220–221

proxy versions

adult proxy guidelines, 210–211

EQ-5D-Y valuation, 212

valuations

EQ-5D-Y version, 219

Luciana’s document, 217

3L Youth version, 218

Nancy Devlin, 217

VAS, 214

PROMs. See Patient reported outcome

measures (PROMs)

QQuality-adjusted life years (QALYs), 3

Quality of Well-being (QWB), 2, 15

SSickness Impact Profile (SIP), 15

Standard gamble (SG), 80

TTime-trade off (TTO), 80, 81

Translation issues

Barcelona Plenary Meeting 1995, 67–68

Brunel Plenary Meeting 1994, 66–67

EQ-net project

Barcelona Plenary Meeting 2006, 75

cognitive/conceptual problems, 74

EQ-5D concepts, 72

European languages, 73

evident variations, 72

further research, 72–73

The Hague, The Netherlands September

2007, 75–77

health outcomes assessment, 74

interview process, 73

language versions, 73

quality control, 73

guidelines, 67

Hannover Plenary Meeting 1998, 71

Oslo Plenary Meeting 1996

Czech translation report, 70

decisions and action, 68–69

Scientific Meeting, 69–70



TTO. See Time-trade off (TTO)

VValuation, EQ-5D

Association Meetings, 101–102

Athens Plenary Meeting 2010, 121

Barcelona Plenary Meeting 1995, 87–88

Baveno Italy Plenary Meeting 2008,

110, 111

biomed EQ-Net Project, 1998–2001

EQ-5D TTO values, 95–96

EQ-5D VAS valuations, 92–93

European EQ-5D VAS valuation set,

93–95

VAS and TTO databases, 91–92

Brunel Plenary Meeting 1994, 84–85

4C Pilot Study Analysis Team Meeting

May 2011, 124–125

DCE Meeting March 2007, 106–107

early years, 1987‐1990, 79–81Eighth VTF Meeting May 2009, 114–115

Eleventh VTF Meeting February 2010,

118–119

Executive Committee, 101–103

Fifteenth VTFMeeting December 2010, 123

Fifth VTF Meeting May 2007, 108–109

First EQ-5D Valuation Task Force Meeting

June 2006

position papers, 104

prioritisation, 104–105

Fortieth Executive Committee Meeting

March 2011, 124

Forty-Fourth Executive Committee

Meeting December 2011, 128–129

Forty-Second Executive Committee

Meeting June 2011, 125

Fourteenth VTF Meeting Athens

September 2010, 121

Fourth VTF Meeting March 2007, 107–108

Hannover Plenary Meeting 1998, 89

Index 287

Valuation (cont.)Helsinki Plenary Meeting 1992, 82–83

Lund Plenary Meeting 1991, 81–82

3L valuation protocol, 112–113

The Netherlands Plenary Meeting

September 2007, 109

Ninth VTF Meeting Paris September

2009, 116

Oslo Plenary Meeting 1996, 88

Oxford Plenary Meeting September

2011, 127

Pamplona Plenary Meeting 2000, 90

Paris Plenary Meeting 2009, 116

Plenary Meetings 2001–2007

economics papers, 100

HRQoL instruments, 99

5-level approach, 99–100

modelling, 99

TTO, 98

valuation-related papers, 100–101

VAS, 96–98

publication plan multi-country valuation

study, 126

Rotterdam Plenary Meeting 1993, 83–84


Second VTF Meeting November 2006,

105–106

Seventh VTF Meeting February 2009, 114


Sixteenth VTF Meeting March 2011, 123

Sixth VTF Meeting Baveno September

2008, 110–111

State of Play Paper 1996

alternative scaling approaches, 86

health states, number of, 85–86

modelling, 86–87

valuation task, 85

Tenth VTF Meeting October 2009, 117

Thirteenth VTF Meeting May 2010, 120

Thirtieth Board Meeting November

2009, 117

Thirty-Eighth Executive Committee

Meeting October 2010, 122

Thirty-First Executive Committee Meeting

Paris September 2009, 115

Thirty-Ninth Executive Committee

Meeting November 2010, 123

Thirty-Seventh Executive Committee

Meeting September 2010 Athens,

122

Thirty-Sixth Executive Committee Meeting

June 2010, 119–120

Twelfth VTF Meeting 26 April 2010, 119

Twenty-First Board Meeting October 2006,

105

Twenty-Ninth Executive Committee

Meeting July 2007, 109

Twenty-Ninth Executive Committee

Meeting May 2009, 115

VTF Meeting June 2011, 125

Version Management Group (VMG), 63, 77

Visual analogue scale (VAS), 80, 81

YYouth task force

ADHD, 205–206

CFTF, 204

child-friendly, 205

EQ-5D, 206

EQ-5D-Y, 204–205

The Hague, September 2007, 209

instrument, 207

international English version, 209

Ravens-Sieberer material, 208

Sitges, 1999, 205

288 Index

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