General population normative data for the EORTC QLQ-C30 health-related quality of life questionnaire based on 15,386 persons across 13 European countries, Canada and the Unites States

S Nolte; G Liegl; M A Petersen; N K Aaronson; A Costantini; P M Fayers; M Groenvold; B Holzner; C D Johnson; G Kemmler; K A Tomaszewski; A Waldmann; T E Young; M Rose; EORTC Quality of Life Group

doi:10.1016/j.ejca.2018.11.024

General population normative data for the EORTC QLQ-C30 health-related quality of life questionnaire based on 15,386 persons across 13 European countries, Canada and the Unites States

Eur J Cancer. 2019 Jan:107:153-163. doi: 10.1016/j.ejca.2018.11.024. Epub 2018 Dec 19.

Authors

S Nolte¹, G Liegl², M A Petersen³, N K Aaronson⁴, A Costantini⁵, P M Fayers⁶, M Groenvold⁷, B Holzner⁸, C D Johnson⁹, G Kemmler⁸, K A Tomaszewski¹⁰, A Waldmann¹¹, T E Young¹², M Rose¹³; EORTC Quality of Life Group

Affiliations

¹ Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany; Population Health Strategic Research Centre, School of Health and Social Development, Deakin University, Burwood, VIC, Australia. Electronic address: sandra.nolte@charite.de.
² Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.
³ Department of Palliative Medicine, Bispebjerg Hospital, Copenhagen, Denmark.
⁴ Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands.
⁵ Psycho-Oncology Unit, Sant'Andrea Hospital Sapienza, University of Rome, Rome, Italy.
⁶ Institute of Applied Health Sciences, University of Aberdeen, Aberdeen, United Kingdom.
⁷ Department of Palliative Medicine, Bispebjerg Hospital, Copenhagen, Denmark; Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
⁸ Department of Psychiatry, Psychotherapy and Psychosomatics, Innsbruck Medical University, Innsbruck, Austria.
⁹ University of Southampton, Southampton, United Kingdom.
¹⁰ Health Outcomes Research Unit, Department of Gerontology, Geriatrics, and Social Work, Faculty of Education, Ignatianum Academy, Krakow, Poland.
¹¹ Institute of Social Medicine and Epidemiology, University of Luebeck, Luebeck, Germany; Ministry for Health and Consumer Protection, Hamburg Cancer Registry, Hamburg, Germany.
¹² East & North Hertfordshire NHS Trust Including Mount Vernon Cancer Centre, Northwood, Middlesex, United Kingdom.
¹³ Department of Psychosomatic Medicine, Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany; Quantitative Health Sciences, Outcomes Measurement Science, University of Massachusetts Medical School, Worcester, MA, USA.

PMID: 30576971
DOI: 10.1016/j.ejca.2018.11.024

Abstract

Objective: The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 health-related quality of life questionnaire is one of the most widely used cancer-specific health-related quality of life questionnaires worldwide. General population norm data can facilitate the interpretation of QLQ-C30 data obtained from cancer patients. This study aimed at systematically collecting norm data from the general population to develop European QLQ-C30 norm scores and to generate comparable norm data for individual countries in Europe and North America.

Methods: We collected QLQ-C30 data from the general population across 11 European Union (EU) countries, Russia, Turkey, Canada and United States (n ≥ 1000/country). Representative samples were stratified by sex and age groups (18-39, 40-49, 50-59, 60-69 and ≥ 70 years). After applying weights based on the United Nations population distribution statistics, we calculated QLQ-C30 domain scores to generate a 'European QLQ-C30 Norm' based on the EU countries. Further, we calculated QLQ-C30 norm scores for all 15 individual countries.

Results: A total of 15,386 respondents completed the online survey. For the EU sample, most QLQ-C30 domains showed differences by sex/age, with men scoring somewhat better health than women, while age effects varied across domains. Substantially larger differences were seen in inter-country comparisons, with Austrian and Dutch respondents reporting consistently better health compared with British and Polish respondents.

Conclusions: This study is the first to systematically collect EORTC QLQ-C30 general population norm data across Europe and North America applying a consistent data collection method across 15 countries. These new norm data facilitate valid intra-country as well as inter-country comparisons and QLQ-C30 score interpretation.

Keywords: Canada; EORTC QLQ-C30; Europe; General population; Quality of life; USA; norm data; normative data; patient-reported outcomes; self-report; survey.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Aged
Algorithms
Canada / epidemiology
Europe / epidemiology
Female
Health Status*
Humans
Male
Middle Aged
Models, Statistical*
Neoplasms / diagnosis
Neoplasms / epidemiology
Neoplasms / psychology*
Neoplasms / therapy
North America / epidemiology
Psychometrics
Quality of Life*
Reference Values
Social Class
Surveys and Questionnaires / standards*
Young Adult