Development of the EQ-5D-Y: a Child-friendly Version of the EQ-5D

Overview

Journal Qual Life Res

Specialties Pharmacology
Rehabilitation Medicine

Date 2010 Apr 21

PMID 20405245

Citations 390

Authors

Nora Wille

Xavier Badia

Gouke Bonsel

Kristina Burstrom

Gulia Cavrini

Nancy Devlin

Ann-Charlotte Egmar

Wolfgang Greiner

Narcis Gusi

Michael Herdman

Jennifer Jelsma

Paul Kind

Luciana Scalone

Ulrike Ravens-Sieberer

Affiliations

Soon will be listed here.

Abstract

Purpose: To develop a self-report version of the EQ-5D for younger respondents, named the EQ-5D-Y (Youth); to test its comprehensibility for children and adolescents and to compare results obtained using the standard adult EQ-5D and the EQ-5D-Y.

Methods: An international task force revised the content of EQ-5D and wording to ensure relevance and clarity for young respondents. Children's and adolescents' understanding of the EQ-5D-Y was tested in cognitive interviews after the instrument was translated into German, Italian, Spanish and Swedish. Differences between the EQ-5D and the EQ-5D-Y regarding frequencies of reported problems were investigated in Germany, Spain and South Africa.

Results: The content of the EQ-5D dimensions proved to be appropriate for the measurement of HRQOL in young respondents. The wording of the questionnaire had to be adapted which led to small changes in the meaning of some items and answer options. The adapted EQ-5D-Y was satisfactorily understood by children and adolescents in different countries. It was better accepted and proved more feasible than the EQ-5D. The administration of the EQ-5D and of the EQ-5D-Y causes differences in frequencies of reported problems.

Conclusions: The newly developed EQ-5D-Y is a useful tool to measure HRQOL in young people in an age-appropriate manner.

Citing Articles

A head-to-head comparison of the adult EQ-5D-5L and youth EQ-5D-Y-5L in adolescents with idiopathic scoliosis.

Bonsel J, Peeters C, Reijman M, Dings T, Rutges J, Kempen D J Patient Rep Outcomes. 2025; 9(1):13.

PMID: 39878911 PMC: 11780234. DOI: 10.1186/s41687-025-00842-z.

Challenges and possibilities when doing research on active school travel interventions in a school setting - a non-randomized pilot study assessing feasibility of an evaluation design.

Andersson M, Tseli E, Lindqvist A, Rutberg S, Palstam A BMC Public Health. 2025; 25(1):286.

PMID: 39849394 PMC: 11755894. DOI: 10.1186/s12889-025-21445-9.

Safe, effective and cost-effective oxygen saturation targets for children and adolescents with respiratory distress: protocol for a randomised controlled trial (OxyKids study).

Louman S, van Stralen K, Koppelman G, Vaessen-Verberne A, Bekhof J, Bosmans J BMJ Open. 2025; 14(12):e087891.

PMID: 39806594 PMC: 11667372. DOI: 10.1136/bmjopen-2024-087891.

Sensory and Motor Function, Pain, and Health Status in Children with Arthrogryposis and Myelomeningocele.

Bartonek A, Eriksson M Children (Basel). 2025; 11(12.

PMID: 39767908 PMC: 11674846. DOI: 10.3390/children11121480.

Delivering evidence-based treatment via telehealth for Anorexia Nervosa in rural health settings: a multi-site feasibility implementation study.

Hambleton A, Le Grange D, Kim M, Miskovic-Wheatley J, Touyz S, Maguire S J Eat Disord. 2024; 12(1):207.

PMID: 39702429 PMC: 11661034. DOI: 10.1186/s40337-024-01175-w.

References

Badia X, Garcia-Hernandez G, Cobos N, Nocea G, Roset M . [Validity of the Spanish version of the Pediatric Quality of Life Questionnaire for evaluating quality of life in asthmatic children]. Med Clin (Barc). 2001; 116(15):565-72. DOI: 10.1016/s0025-7753(01)71907-0. View

Eiser C, Morse R . A review of measures of quality of life for children with chronic illness. Arch Dis Child. 2001; 84(3):205-11. PMC: 1718699. DOI: 10.1136/adc.84.3.205. View

Varni J, Burwinkle T, Lane M . Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005; 3:34. PMC: 1156928. DOI: 10.1186/1477-7525-3-34. View

Seid M, Varni J, Segall D, Kurtin P . Health-related quality of life as a predictor of pediatric healthcare costs: a two-year prospective cohort analysis. Health Qual Life Outcomes. 2004; 2:48. PMC: 521194. DOI: 10.1186/1477-7525-2-48. View

Jelsma J . A comparison of the performance of the EQ-5D and the EQ-5D-Y health-related quality of life instruments in South African children. Int J Rehabil Res. 2010; 33(2):172-7. DOI: 10.1097/MRR.0b013e32832bb0f7. View

Ravens-Sieberer U, Erhart M, Wille N, Wetzel R, Nickel J, Bullinger M . Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics. 2006; 24(12):1199-220. DOI: 10.2165/00019053-200624120-00005. View

Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Power M . The KIDSCREEN-52 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Value Health. 2008; 11(4):645-58. DOI: 10.1111/j.1524-4733.2007.00291.x. View

Rebok G, Riley A, Forrest C, Starfield B, Green B, Robertson J . Elementary school-aged children's reports of their health: a cognitive interviewing study. Qual Life Res. 2001; 10(1):59-70. DOI: 10.1023/a:1016693417166. View

Rajmil L, Herdman M, Fernandez de Sanmamed M, Detmar S, Bruil J, Ravens-Sieberer U . Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J Adolesc Health. 2004; 34(1):37-45. DOI: 10.1016/s1054-139x(03)00249-0. View

10.

Gemke R, Bonsel G . Comparative assessment of pediatric intensive care: a national multicenter study. Pediatric Intensive Care Assessment of Outcome (PICASSO) Study Group. Crit Care Med. 1995; 23(2):238-45. DOI: 10.1097/00003246-199502000-00007. View

11.

Mansour M, Kotagal U, Rose B, Ho M, Brewer D, Roy-Chaudhury A . Health-related quality of life in urban elementary schoolchildren. Pediatrics. 2003; 111(6 Pt 1):1372-81. DOI: 10.1542/peds.111.6.1372. View

12.

Burstrom K, Svartengren M, Egmar A . Testing a Swedish child-friendly pilot version of the EQ-5D instrument--initial results. Eur J Public Health. 2010; 21(2):178-83. DOI: 10.1093/eurpub/ckq042. View

13.

Landgraf J, Maunsell E, Speechley K, Bullinger M, Campbell S, Abetz L . Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Qual Life Res. 1998; 7(5):433-45. DOI: 10.1023/a:1008810004694. View

14.

Ravens-Sieberer U, Wille N, Badia X, Bonsel G, Burstrom K, Cavrini G . Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res. 2010; 19(6):887-97. PMC: 2892614. DOI: 10.1007/s11136-010-9649-x. View

15.

Rabin R, de Charro F . EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001; 33(5):337-43. DOI: 10.3109/07853890109002087. View

16.

Varni J, Seid M, Rode C . The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999; 37(2):126-39. DOI: 10.1097/00005650-199902000-00003. View

17.

Burstrom K, Egmar A, Lugner A, Eriksson M, Svartengren M . A Swedish child-friendly pilot version of the EQ-5D instrument--the development process. Eur J Public Health. 2010; 21(2):171-7. DOI: 10.1093/eurpub/ckq037. View

18.

Petersen C, Schmidt S, Power M, Bullinger M . Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res. 2005; 14(4):1065-77. DOI: 10.1007/s11136-004-2575-z. View

19.

Stolk E, Busschbach J, Vogels T . Performance of the EuroQol in children with imperforate anus. Qual Life Res. 2000; 9(1):29-38. DOI: 10.1023/a:1008923029886. View

20.

Detmar S, Bruil J, Ravens-Sieberer U, Gosch A, Bisegger C . The use of focus groups in the development of the KIDSCREEN HRQL questionnaire. Qual Life Res. 2006; 15(8):1345-53. DOI: 10.1007/s11136-006-0022-z. View