EXTENSION OF THE LABELS WITHIN THE EQ-5D-Y

Author(s)

Kreimeier S1, Åström M2, Burström K2, Egmar A3, Gusi N4, Herdman M5, Kind P6, Oppe M7, Pérez Sousa M4, Greiner W8
1University of Bielefeld, Bielefeld, Germany, 2Karolinska Institutet Stockholm, Stockholm, Sweden, 3The Swedish Red Cross University College Stockholm, Stockholm, Sweden, 4University of Extremadura, Caceres, Spain, 5Insight Consulting and Research, Barcelona, Spain, 6HSE University, St. Petersburg, Russia, 7EuroQol Research Foundation, Rotterdam, The Netherlands, 8School of Public Health, Bielefeld University, Bielefeld, Germany

OBJECTIVES: According to the standard three-level format of the EQ-5D, the EQ-5D-Y was developed as "Youth" version, for ages 8-15. Increasingly, it is criticized for ceiling effects and to be overly simplistic. Besides, it is assumed that the EQ-5D-Y do not pick up small changes in health-related quality of life. The study aimed to identify appropriate level labels to develop a four-level (4L) and a five-level (5L) version of the EQ-5D-Y and to test comprehensibility and feasibility of these versions. METHODS: The study was conducted in Germany, Spain, Sweden and UK. Firstly, a pool of possible labels was developed by a literature review and focus group interviews. Using sorting- and response scaling tasks, children and adolescents aged 8-15 rated the severity of the identified labels. Within the second phase, healthy participants aged 8-15 as well as those under treatment for a health condition took part in cognitive interviews (group, individual) to test the extended versions. RESULTS: Each country identified possible labels by a literature review and two focus groups, one with respondents aged 8-10 and one with those aged 11-15 (each with 3-8 participants). Afterwards, 7 to 16 possible new labels per dimension in the different languages were rated in 255 sorting- and response scaling interviews (59-72 interviews per country). About 1/3 of interviews was done in each group: children aged 8-10, 11-12 and 13-15. 140 girls and 115 boys participated. The sample contained respondents with and without a health condition. Each country tested developed 4L and 5L versions by a qualitative approach. The 5L version was identified to be more appropriate and preferred than the 4L. CONCLUSIONS: Study results confirm that an extended version of the instrument is seen as beneficial by the debriefed respondents. Results are the basis for validity testing of the new EQ-5D-5L-Y and for sensitivity testing compared to the EQ-5D-3L-Y.

Conference/Value in Health Info

2016-10, ISPOR Europe 2016, Vienna, Austria

Value in Health, Vol. 19, No. 7 (November 2016)

Code

PHP231

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Multiple Diseases

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