Skip to main content

The European Organisation for Research and Treatment of Cancer (EORTC) Measurement System

  • Chapter
  • First Online:
Handbook of Quality of Life in Cancer

Abstract

In this chapter, we provide a broad introduction to the European Organisation for Research and Treatment of Cancer (EORTC) patient-reported outcome (PRO) measurement system. Firstly, we explain the EORTC perspective on quality of life (QOL) and its modular approach to measure it in patients with cancer. This includes the EORTC QLQ-C30, the most widely used questionnaire for patients with cancer, which can be used in conjunction with questionnaire modules – which are specific for certain PRO domains or cancer types. Secondly, we describe the questionnaire development and validation process for EORTC measures. Moreover, we review other available measures like the computerized adaptive testing (CAT) questionnaires and static short-forms, the EORTC Item Library, EORTC standalone questionnaires, and the EORTC QLU-C10D, a measure for health economic analyses. Finally, we consider how data from EORTC PRO questionnaires can be interpreted using normative data, thresholds for clinical importance, and minimal important differences and describe how different EORTC measures can be used and implemented in clinical research and practice.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 109.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 139.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 219.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Our mission – EORTC. https://www.eortc.org/our-mission/. Accessed 10 Mar 2021.

  2. Aaronson NK, Bullinger M, Ahmedzai S. A modular approach to quality-of-life assessment in cancer clinical trials. In: Scheurlen H, Kay R, Baum M, editors. Cancer clinical trials. Berlin/Heidelberg: Springer; 1988. p. 231–49.

    Google Scholar 

  3. Aaronson NK, Ahmedzai S, Bullinger M, Crabeels D, Estapè J, Filiberti A, Flechtner H, Frick U, Hurny C, Kaasa S. The EORTC core quality of life questionnaire: interim results of an international field study. In: Osoba D, editor. Effect of cancer on quality of life. Boca Raton: CRC Press; 1991. p. 185–203.

    Google Scholar 

  4. Bergman B, Aaronson NK, Ahmedzai S, Kaasa S, Sullivan M. The EORTC QLQ-LC13: a modular supplement to the EORTC Core Quality of Life Questionnaire (QLQ-C30) for use in lung cancer clinical trials. EORTC Study Group on Quality of Life. Eur J Cancer. 1994;30A:635–42.

    Google Scholar 

  5. Quality of Life Group – EORTC. https://qol.eortc.org/quality-of-life-group/. Accessed 10 Mar 2021.

  6. Johnson C, Aaronson NK, Blazeby J, et al. Guidelines for developing quality of life questionnaires. Bruss: EORTC Publ; 2011.

    Google Scholar 

  7. Petersen MA, Groenvold M, Aaronson NK, et al. Development of computerised adaptive testing (CAT) for the EORTC QLQ-C30 dimensions – general approach and initial results for physical functioning. Eur J Cancer. 2010;46:1352–8.

    Google Scholar 

  8. Petersen MA, Aaronson NK, Arraras JI, et al. The EORTC CAT Core-the computer adaptive version of the EORTC QLQ-C30 questionnaire. Eur J Cancer. 2018;100:8–16.

    Google Scholar 

  9. Petersen MA, Aaronson NK, Conroy T, et al. International validation of the EORTC CAT Core: a new adaptive instrument for measuring core quality of life domains in cancer. Qual Life Res. 2020;29:1405–17.

    Google Scholar 

  10. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85:365–76.

    Google Scholar 

  11. Gundy CM, Aaronson NK. Effects of mode of administration (MOA) on the measurement properties of the EORTC QLQ-C30: a randomized study. Health Qual Life Outcomes. 2010;8:35.

    Google Scholar 

  12. Velikova G, Wright EP, Smith AB, Cull A, Gould A, Forman D, Perren T, Stead M, Brown J, Selby PJ. Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires. J Clin Oncol Off J Am Soc Clin Oncol. 1999;17:998–1007.

    Google Scholar 

  13. Giesinger JM, Efficace F, Aaronson N, Calvert M, Kyte D, Cottone F, Cella D, Gamper E-M. Past and current practice of patient-reported outcome measurement in randomized cancer clinical trials: a systematic review. Value Health. 2021;24(4):585–91. https://doi.org/10.1016/j.jval.2020.11.004.

    Article  Google Scholar 

  14. Howell D, Molloy S, Wilkinson K, Green E, Orchard K, Wang K, Liberty J. Patient-reported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors. Ann Oncol Off J Eur Soc Med Oncol. 2015;26:1846–58.

    Google Scholar 

  15. Groenvold M, Petersen MA, Aaronson NK, et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer. 2006;42:55–64.

    Google Scholar 

  16. Giesinger JM, Kieffer JM, Fayers PM, Groenvold M, Petersen MA, Scott NW, MAG S, Velikova G, Aaronson NK, EORTC Quality of Life Group. Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol. 2016;69:79–88.

    Google Scholar 

  17. Efficace F, Cottone F, Sommer K, et al. Validation of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 summary score in patients with hematologic malignancies. Value Health. 2019;22:1303–10.

    Google Scholar 

  18. van Leeuwen M, Husson O, Alberti P, et al. Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire. Health Qual Life Outcomes. 2018;16:114.

    Google Scholar 

  19. van der Linden W, Hambelton R. Handbook of item response theory. 3rd ed. CRC Press Inc.; 2016.

    Google Scholar 

  20. Petersen MA, Aaronson NK, Arraras JI, et al. The EORTC computer-adaptive tests measuring physical functioning and fatigue exhibited high levels of measurement precision and efficiency. J Clin Epidemiol. 2013;66:330–9.

    Google Scholar 

  21. Gamper E-M, Martini C, Petersen MA, Virgolini I, Holzner B, Giesinger JM. Do patients consider computer-adaptive measures more appropriate than static questionnaires? J Patient Rep Outcomes. 2019;3:7.

    Google Scholar 

  22. Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, Wolfe J. Symptoms and suffering at the end of life in children with cancer: an Australian perspective. Med J Aust. 2010;192:71–5.

    Google Scholar 

  23. Gamper EM, King MT, Norman R, Efficace F, Cottone F, Holzner B, Kemmler G, European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group. EORTC QLU-C10D value sets for Austria, Italy, and Poland. Qual Life Res. 2020;29:2485–95.

    Google Scholar 

  24. King MT, Viney R, Simon Pickard A, et al. Australian utility weights for the EORTC QLU-C10D, a multi-attribute utility instrument derived from the cancer-specific quality of life questionnaire, EORTC QLQ-C30. PharmacoEconomics. 2018;36:225–38.

    Google Scholar 

  25. Kluetz PG, Kanapuru B, Lemery S, et al. Informing the tolerability of cancer treatments using patient-reported outcome measures: summary of an FDA and Critical Path Institute workshop. Value Health. 2018;21:742–7.

    Google Scholar 

  26. Kluetz PG, Papadopoulos EJ, Johnson LL, et al. Focusing on core patient-reported outcomes in cancer clinical trials-response. Clin Cancer Res Off J Am Assoc Cancer Res. 2016;22:5618.

    Google Scholar 

  27. European Medicines Agency. Appendix 2 to the guideline on the evaluation of anticancer medicinal products in man: the use of patient-reported outcome (PRO) measures in oncology studies. 2016.

    Google Scholar 

  28. Bell JA, Galaznik A, Pompilus F, Strzok S, Bejar R, Scipione F, Fram RJ, Faller DV, Cano S, Marquis P. A pragmatic patient-reported outcome strategy for rare disease clinical trials: application of the EORTC item library to myelodysplastic syndromes, chronic myelomonocytic leukemia, and acute myeloid leukemia. J Patient Rep Outcomes. 2019;3(1):35. https://doi.org/10.1186/s41687-019-0123-4.

    Article  Google Scholar 

  29. Mouillet G, Fritzsch J, Paget-Bailly S, et al. Health-related quality of life assessment for patients with advanced or metastatic renal cell carcinoma treated with a tyrosine kinase inhibitor using electronic patient-reported outcomes in daily clinical practice (QUANARIE trial): study protocol. Health Qual Life Outcomes. 2019;17(1):25. https://doi.org/10.1186/s12955-019-1085-1.

    Article  Google Scholar 

  30. Fayers PM, Aaronson NK, Bjordal K, Groenvold M, Curran D, Bottomley A, on behalf of the EORTC Quality of Life Group. The EORTC QLQ-C30 scoring manual. 3rd ed. Brussels: EORCT; 2001.

    Google Scholar 

  31. Liegl G, Petersen MA, Groenvold M, et al. Establishing the European Norm for the health-related quality of life domains of the computer-adaptive test EORTC CAT Core. Eur J Cancer. 2019;107:133–41.

    Google Scholar 

  32. Nolte S, Liegl G, Petersen MA, et al. 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;107:153–63.

    Google Scholar 

  33. Lehmann J, Giesinger JM, Nolte S, Sztankay M, Wintner LM, Liegl G, Rose M, Holzner B, EORTC Quality of Life Group. Normative data for the EORTC QLQ-C30 from the Austrian general population. Health Qual Life Outcomes. 2020;18:275.

    Google Scholar 

  34. Nolte S, Waldmann A, Liegl G, Petersen MA, Groenvold M, Rose M, EORTC Quality of Life Group. Updated EORTC QLQ-C30 general population norm data for Germany. Eur J Cancer. 2020;137:161–70.

    Google Scholar 

  35. Hinz A, Singer S, Brähler E. European reference values for the quality of life questionnaire EORTC QLQ-C30: results of a German investigation and a summarizing analysis of six European general population normative studies. Acta Oncol Stockh Swed. 2014;53:958–65.

    Google Scholar 

  36. Mols F, Husson O, Oudejans M, Vlooswijk C, Horevoorts N, van de Poll-Franse LV. Reference data of the EORTC QLQ-C30 questionnaire: five consecutive annual assessments of approximately 2000 representative Dutch men and women. Acta Oncol Stockh Swed. 2018;57:1381–91.

    Google Scholar 

  37. Quinten C, Coens C, Ghislain I, et al. The effects of age on health-related quality of life in cancer populations: a pooled analysis of randomized controlled trials using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 involving 6024 cancer patients. Eur J Cancer. 2015;51:2808–19.

    Google Scholar 

  38. Høyer M, Johansson B, Nordin K, Bergkvist L, Ahlgren J, Lidin-Lindqvist A, Lambe M, Lampic C. Health-related quality of life among women with breast cancer – a population-based study. Acta Oncol Stockh Swed. 2011;50:1015–26.

    Google Scholar 

  39. van de Poll-Franse LV, Horevoorts N, van Eenbergen M, et al. The patient reported outcomes following initial treatment and long term evaluation of survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts. Eur J Cancer. 2011;47:2188–94.

    Google Scholar 

  40. Data Repository – EORTC. https://qol.eortc.org/projectqol/data-repository/, https://qol.eortc.org/projectqol/data-repository/. Accessed 8 Mar 2021.

  41. Giesinger JM, Loth FLC, Aaronson NK, et al. Thresholds for clinical importance were established to improve interpretation of the EORTC QLQ-C30 in clinical practice and research. J Clin Epidemiol. 2020;118:1–8.

    Google Scholar 

  42. Pilz MJ, Aaronson NK, Arraras JI, et al. Evaluating the thresholds for clinical importance of the EORTC QLQ-C15-PAL in patients receiving palliative treatment. J Palliat Med. 2021;24(3):397–404. https://doi.org/10.1089/jpm.2020.0159.

    Article  Google Scholar 

  43. Giesinger JM, Loth FLC, Aaronson NK, et al. Thresholds for clinical importance were defined for the European Organisation for Research and Treatment of Cancer Computer Adaptive Testing Core-an adaptive measure of core quality of life domains in oncology clinical practice and research. J Clin Epidemiol. 2020;117:117–25.

    Google Scholar 

  44. Giesinger JM, Aaronson NK, Arraras JI, et al. A cross-cultural convergent parallel mixed methods study of what makes a cancer-related symptom or functional health problem clinically important. Psychooncology. 2018;27:548–55.

    Google Scholar 

  45. King MT. A point of minimal important difference (MID): a critique of terminology and methods. Expert Rev Pharmacoecon Outcomes Res. 2011;11:171–84.

    Google Scholar 

  46. Carrasco-Labra A, Devji T, Qasim A, et al. Minimal important difference estimates for patient-reported outcomes: a systematic survey. J Clin Epidemiol. 2021;133:61–71.

    Google Scholar 

  47. Revicki D, Hays RD, Cella D, Sloan J. Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. J Clin Epidemiol. 2008;61:102–9.

    Google Scholar 

  48. Osoba D, Rodrigues G, Myles J, Zee B, Pater J. Interpreting the significance of changes in health-related quality-of-life scores. J Clin Oncol. 1998;16:139–44.

    Google Scholar 

  49. King MT. The interpretation of scores from the EORTC quality of life questionnaire QLQ-C30. Qual Life Res. 1996;5:555–67.

    Google Scholar 

  50. Cocks K, King MT, Velikova G, de Castro G, Martyn St-James M, Fayers PM, Brown JM. Evidence-based guidelines for interpreting change scores for the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. Eur J Cancer. 2012;48:1713–21.

    Google Scholar 

  51. Cocks K, King MT, Velikova G, Martyn St-James M, Fayers PM, Brown JM. Evidence-based guidelines for determination of sample size and interpretation of the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. J Clin Oncol. 2011;29:89–96.

    Google Scholar 

  52. Cella D, Hahn EA, Dineen K. Meaningful change in cancer-specific quality of life scores: differences between improvement and worsening. Qual Life Res. 2002;11:207–21.

    Google Scholar 

  53. Musoro JZ, Bottomley A, Coens C, et al. Interpreting European Organisation for Research and Treatment for Cancer Quality of life Questionnaire core 30 scores as minimally importantly different for patients with malignant melanoma. Eur J Cancer. 2018;104:169–81.

    Google Scholar 

  54. Dirven L, Musoro JZ, Coens C, et al. Establishing anchor-based minimally important differences for the EORTC QLQ-C30 in glioma patients. Neuro Oncol. 2021;23(8):1327–36. https://doi.org/10.1093/neuonc/noab037.

    Article  Google Scholar 

  55. Musoro JZ, Coens C, Greimel E, et al. Minimally important differences for interpreting European Organisation for Research and Treatment of Cancer (EORTC) Quality of life Questionnaire core 30 scores in patients with ovarian cancer. Gynecol Oncol. 2020;159:515–21.

    Google Scholar 

  56. Musoro JZ, Coens C, Fiteni F, et al. Minimally important differences for interpreting EORTC QLQ-C30 scores in patients with advanced breast cancer. JNCI Cancer Spectr. 2019;3:pkz037.

    Google Scholar 

  57. Musoro JZ, Coens C, Singer S, et al. Minimally important differences for interpreting European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 scores in patients with head and neck cancer. Head Neck. 2020;42:3141–52.

    Google Scholar 

  58. Musoro JZ, Sodergren SC, Coens C, et al. Minimally important differences for interpreting the EORTC QLQ-C30 in patients with advanced colorectal cancer treated with chemotherapy. Colorectal Dis. 2020;22(12):2278–87. https://doi.org/10.1111/codi.15295.

    Article  Google Scholar 

  59. Oerlemans S, Arts LP, Horevoorts NJ, van de Poll-Franse LV. “Am I normal?” the wishes of patients with lymphoma to compare their patient-reported outcomes with those of their peers. J Med Internet Res. 2017;19:e288.

    Google Scholar 

  60. Wintner LM, Sztankay M, Aaronson N, et al. The use of EORTC measures in daily clinical practice-a synopsis of a newly developed manual. Eur J Cancer Oxf Engl. 2016;68:73–81.

    Google Scholar 

  61. Kuijpers W, Giesinger JM, Zabernigg A, Young T, Friend E, Tomaszewska IM, Aaronson NK, Holzner B. Patients’ and health professionals’ understanding of and preferences for graphical presentation styles for individual-level EORTC QLQ-C30 scores. Qual Life Res. 2016;25:595–604.

    Google Scholar 

  62. Snyder C, Smith K, Holzner B, Rivera YM, Bantug E, Brundage M, PRO Data Presentation Delphi Panel. Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data. Qual Life Res. 2019;28:345–56.

    Google Scholar 

  63. Giesinger JM, Blazeby J, Aaronson NK, et al. Differences in patient-reported outcomes that are Most frequently detected in randomized controlled trials in patients with solid tumors: a pooled analysis of 229 trials. Value Health. 2020;23:666–73.

    Google Scholar 

  64. van Roij J, Fransen H, van de Poll-Franse L, Zijlstra M, Raijmakers N. Measuring health-related quality of life in patients with advanced cancer: a systematic review of self-administered measurement instruments. Qual Life Res. 2018;27:1937–55.

    Google Scholar 

  65. Efficace F, Collins GS, Cottone F, Giesinger JM, Sommer K, Anota A, Schlussel MM, Fazi P, Vignetti M. Patient-reported outcomes as independent prognostic factors for survival in oncology: systematic review and meta-analysis. Value Health J Int Soc Pharmacoeconomics Outcomes Res. 2021;24:250–67.

    Google Scholar 

  66. Sztankay M, Neppl L, Wintner LM, Loth FL, Willenbacher W, Weger R, Weyrer W, Steurer M, Rumpold G, Holzner B. Complementing clinical cancer registry data with patient reported outcomes: a feasibility study on routine electronic patient-reported outcome assessment for the Austrian Myelome Registry. Eur J Cancer Care (Engl). 2019;28:e13154.

    Google Scholar 

  67. Kotronoulas G, Kearney N, Maguire R, Harrow A, Di Domenico D, Croy S, MacGillivray S. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. JCO. 2014;32:1480–501.

    Google Scholar 

  68. Marshall S, Haywood K, Fitzpatrick R. Impact of patient-reported outcome measures on routine practice: a structured review. J Eval Clin Pract. 2006;12:559–68.

    Google Scholar 

  69. Detmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA. 2002;288:3027–34.

    Google Scholar 

  70. Hilarius DL, Kloeg PH, Gundy CM, Aaronson NK. Use of health-related quality-of-life assessments in daily clinical oncology nursing practice. Cancer. 2008;113:628–37.

    Google Scholar 

  71. Haywood K, Marshall S, Fitzpatrick R. Patient participation in the consultation process: a structured review of intervention strategies. Patient Educ Couns. 2006;63:12–23.

    Google Scholar 

  72. Nguyen H, Butow P, Dhillon H, Sundaresan P. A review of the barriers to using Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) in routine cancer care. J Med Radiat Sci. 2020;00:1–10.

    Google Scholar 

  73. Wintner LM, Sztankay M, Giesinger J, et al. Manual for the use of EORTC measures in daily clinical practice. 1st ed. Brussels: EORTC; 2016.

    Google Scholar 

  74. Stover AM, Haverman L, van Oers HA, Greenhalgh J, Potter CM, ISOQOL PROMs/PREMs in Clinical Practice Implementation Science Work Group. Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings. Qual Life Res. 2020; https://doi.org/10.1007/s11136-020-02564-9.

  75. Koller M, Warncke S, Hjermstad MJ, et al. Use of the lung cancer-specific Quality of Life Questionnaire EORTC QLQ-LC13 in clinical trials: a systematic review of the literature 20 years after its development. Cancer. 2015;121:4300–23.

    Google Scholar 

  76. Koller M, Shamieh O, Hjermstad MJ, et al. Psychometric properties of the updated EORTC module for assessing quality of life in patients with lung cancer (QLQ-LC29): an international, observational field study. Lancet Oncol. 2020;21:723–32.

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Johannes M. Giesinger .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2022 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Giesinger, J.M., Lehmann, J. (2022). The European Organisation for Research and Treatment of Cancer (EORTC) Measurement System. In: Kassianos, A.P. (eds) Handbook of Quality of Life in Cancer. Springer, Cham. https://doi.org/10.1007/978-3-030-84702-9_5

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-84702-9_5

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-84701-2

  • Online ISBN: 978-3-030-84702-9

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics