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Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire

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Journal of Cancer Survivorship Aims and scope Submit manuscript

A Correction to this article was published on 11 March 2022

This article has been updated

Abstract

Purpose

The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales.

Methods

We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales.

Results

Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items.

Conclusions

The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study.

Implications for Cancer Survivors

The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors.

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Availability of data and material

The data that support the findings of this study are available from the Division of Psychosocial Research and Epidemiology of the Netherlands Cancer Institute (contact person: L.V. van de Poll-Franse), but restrictions apply to the availability of these data due to an agreement between the Netherlands Cancer Institute and the European Organisation for Research and Treatment of Cancer Quality of Life Group, and so they are not publicly available. Data are available pending approval of both the Netherlands Cancer Institute and the EORTC.

The QLQ-SURV100 can be requested on the website of the EORTC QLG: EORTC Quality of Life Website https://qol.eortc.org/quality-of-life-group/.

Code availability

Not applicable.

Change history

References

  1. Lagergren P, Schandl A, Aaronson NK, Adami HO, de Lorenzo F, Denis L, et al. Cancer survivorship: an integral part of Europe’s research agenda. Mol Oncol. 2019;13(3):624–35. https://doi.org/10.1002/1878-0261.12428.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Ayanian JZ, Jacobsen PB. Enhancing research on cancer survivors. J Clin Oncol. 2006;24(32):5149–53. https://doi.org/10.1200/JCO.2006.06.7207.

    Article  PubMed  Google Scholar 

  3. Van Leeuwen M, Husson O, Alberti P, Arraras JI, Chinot OL, Costantini A, 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(1):114. https://doi.org/10.1186/s12955-018-0920-0.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Stewart AL, Ware JE, Jr. Measuring functioning and well-being: the medical outcomes study approach. Durham and London: Duke University Press; 1992.

  5. Kulis D, Bottomley A, Whittaker C, van de Poll-Franse LV, Darlington A, Holzner B, et al. The Use of The Eortc item library to supplement Eortc quality of life instruments. Value Health. 2017;20(9):A775. https://doi.org/10.1016/j.jval.2017.08.2236.

    Article  Google Scholar 

  6. Johnson C, Aaronson N, Blazeby JM, Bottomley A, Fayers P, Koller M, et al. Guidelines for developing questionnaire modules. EORTC Quality of Life Group; 2011.

  7. Keller SD, Bayliss MS, Ware JE Jr, Hsu MA, Damiano AM, Goss TF. Comparison of responses to SF-36 Health Survey questions with one-week and four-week recall periods. Health Serv Res. 1997;32(3):367–84.

    CAS  PubMed  PubMed Central  Google Scholar 

  8. Ueda P, Mercer CH, Ghaznavi C, Herbenick D. Trends in frequency of sexual activity and number of sexual partners among adults aged 18 to 44 years in the US, 2000–2018. JAMA Network Open. 2020;3(6):e203833-e. https://doi.org/10.1001/jamanetworkopen.2020.3833.

    Article  Google Scholar 

  9. Karraker A, DeLamater J, Schwartz CR. Sexual frequency decline from midlife to later life. J Gerontol: Ser B. 2011;66B(4):502–12. https://doi.org/10.1093/geronb/gbr058.

    Article  Google Scholar 

  10. Petersen MA, Aaronson NK, Arraras JI, Chie WC, Conroy T, Costantini A, et al. The EORTC CAT Core-The computer adaptive version of the EORTC QLQ-C30 questionnaire. Eur J Cancer. 2018;100:8–16. https://doi.org/10.1016/j.ejca.2018.04.016.

    Article  PubMed  Google Scholar 

  11. Kuliś D, Bottomley A, Velikova G, Greimel E, Koller M, Group obotEQoL. EORTC quality of life Group translation procedure. EORTC Quality of Life Group; 2017.

  12. Kumthekar P, Raizer J, Singh S. Low-grade glioma. Cancer Treat Res. 2015;163:75–87. https://doi.org/10.1007/978-3-319-12048-5_5.

    Article  PubMed  Google Scholar 

  13. Brito C, Azevedo A, Esteves S, Marques AR, Martins C, Costa I, et al. Clinical insights gained by refining the 2016 WHO classification of diffuse gliomas with: EGFR amplification, TERT mutations, PTEN deletion and MGMT methylation. BMC Cancer. 2019;19(1):968. https://doi.org/10.1186/s12885-019-6177-0.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis. 1987;40(5):373–83.

    Article  CAS  PubMed  Google Scholar 

  15. NVivo qualitative data analysis Software. 10 ed: QSR International Pty Ltd.; 2012.

  16. Muthén LK, Muthén BO. Mplus. 5.0 ed 2007.

  17. Schermelleh-Engel K, Moosbrugger H, Müller H. Evaluating the fit of structural equation models: Tests of significance and descriptive goodness-of-fit measures. Methods Psychol Res Online. 2003;8(2):23–74.

    Google Scholar 

  18. Bjorner JB, Kosinski M, Ware JE Jr. Calibration of an item pool for assessing the burden of headaches: an application of item response theory to the headache impact test (HIT). Qual Life Res. 2003;12(8):913–33.

    Article  PubMed  Google Scholar 

  19. Giesinger JM, Kieffer JM, Fayers PM, Groenvold M, Petersen MA, Scott NW, et al. 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. https://doi.org/10.1016/j.jclinepi.2015.08.007.

    Article  PubMed  Google Scholar 

  20. Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000;32(4):1008–15.

    CAS  PubMed  Google Scholar 

  21. Hsu C-C, Sandford BA. The Delphi technique: making sense of consensus. Pract. Assess. Res. Evaluation. 2007;12(1).

  22. Keeney S, Hasson F, McKenna H. Consulting the oracle: ten lessons from using the Delphi technique in nursing research. J Adv Nurs. 2006;53(2):205–12. https://doi.org/10.1111/j.1365-2648.2006.03716.x.

    Article  PubMed  Google Scholar 

  23. COMET. DelphiManager. COMET; 2016.

  24. Akins RB, Tolson H, Cole BR. Stability of response characteristics of a Delphi panel: application of bootstrap data expansion. BMC Med Res Methodol. 2005;5:37. https://doi.org/10.1186/1471-2288-5-37.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Knowles ES, Byers B. Reliability shifts in measurement reactivity: driven by content engagement or self-engagement? J Pers Soc Psychol. 1996;70(5):1080–90. https://doi.org/10.1037/0022-3514.70.5.1080.

    Article  CAS  PubMed  Google Scholar 

  26. Franke GH. “The whole is more than the sum of its parts”: The effects of grouping and randomizing items on the reliability and validity of questionnaires. Eur J Psychol Assess. 1997;13(2):67–74. https://doi.org/10.1027/1015-5759.13.2.67.

    Article  Google Scholar 

  27. Van de Poll-Franse LV, Mols F, Gundy CM, Creutzberg CL, Nout RA, Verdonck-de Leeuw IM, et al. Normative data for the EORTC QLQ-C30 and EORTC-sexuality items in the general Dutch population. Eur J Cancer. 2011;47(5):667–75.

    Article  PubMed  Google Scholar 

  28. van Leeuwen M, Kieffer JM, Efficace F, Fosså SD, Bolla M, Collette L, et al. International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer. Health Qual Life Outcomes. 2017;15(1):97. https://doi.org/10.1186/s12955-017-0670-4.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Fayers PM, Hand DJ. Factor analysis, causal indicators and quality of life. Qual Life Res. 1997;6(2):139–50. https://doi.org/10.1023/a:1026490117121.

    Article  CAS  PubMed  Google Scholar 

  30. Fayers PM, Hand DJ. Causal variables, indicator variables and measurement scales: an example from quality of life. 2002;165(2):233-53.https://doi.org/10.1111/1467-985x.02020.

  31. Fayers PM, Hand DJ, Bjordal K, Groenvold M. Causal indicators in quality of life research. Qual Life Res. 1997;6(5):393–406. https://doi.org/10.1023/a:1018491512095.

    Article  CAS  PubMed  Google Scholar 

  32. Kieffer JM, Verrips E, Hoogstraten J. Model specification in oral health-related quality of life research. Eur J Oral Sci. 2009;117(5):481–4. https://doi.org/10.1111/j.1600-0722.2009.00650.x.

    Article  PubMed  Google Scholar 

  33. Kilburn LS, Banerji J, Bliss JM. The challenges of long-term follow-up data collection in non-commercial, academically-led breast cancer clinical trials: the UK perspective. Trials. 2014;15:379. https://doi.org/10.1186/1745-6215-15-379.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. 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(5):365–76.

    Article  CAS  PubMed  Google Scholar 

  35. Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9.

    Article  CAS  PubMed  Google Scholar 

  36. Zhao L, Portier K, Stein K, Baker F, Smith T. Exploratory factor analysis of the cancer problems in living scale: a report from the American cancer society’s studies of cancer survivors. J Pain Symptom Manage. 2009;37(4):676–86.

    Article  PubMed  Google Scholar 

  37. Zebrack BJ, Ganz PA, Bernaards CA, Petersen L, Abraham L. Assessing the impact of cancer: development of a new instrument for long-term survivors. Psychooncology. 2006;15(5):407–21.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Crespi CM, Ganz PA, Petersen L, Castillo A, Caan B. Refinement and psychometric evaluation of the impact of cancer scale. J Natl Cancer Inst. 2008;100(21):1530–41. https://doi.org/10.1093/jnci/djn340.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Crespi CM, Ganz PA, Petersen L, Smith SK. A procedure for obtaining impact of cancer version 2 scores using version 1 responses. Qual Life Res. 2013;22(1):103–9.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Wyatt G, Kurtz ME, Friedman LL, Given B, Given CW. Preliminary testing of the long-term quality of life (LTQL) instrument for female cancer survivors. J Nurs Meas. 1996;4(2):153–70.

    Article  CAS  PubMed  Google Scholar 

  41. Gordon NH, Siminoff LA. Measuring quality of life of long-term breast cancer survivors: the long term quality of life-breast cancer (LTQOL-BC) Scale. J Psychosoc Oncol. 2010;28(6):589–609. https://doi.org/10.1080/07347332.2010.516806.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Avis NE, Ip E, Foley KL. Evaluation of the quality of life in adult cancer survivors (QLACS) scale for long-term cancer survivors in a sample of breast cancer survivors. Health Qual Life Outcomes. 2006;4:92.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS. Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res. 2005;14(4):1007–23.

    Article  PubMed  Google Scholar 

  44. Ganz PA, Desmond KA, Leedham B, Rowland JH, Meyerowitz BE, Belin TR. Quality of life in long-term, disease-free survivors of breast cancer: a follow-up study. J Natl Cancer Inst. 2002;94(1):39–49.

    Article  PubMed  Google Scholar 

  45. Alfano CM, McGregor BA, Kuniyuki A, Reeve BB, Bowen DJ, Wilder Smith A, et al. Psychometric evaluation of the brief cancer impact assessment among breast cancer survivors. Oncology. 2006;70(3):190–202. https://doi.org/10.1159/000094320.

    Article  PubMed  Google Scholar 

  46. Ferrell BR, Dow KH, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res. 1995;4(6):523–31.

    Article  CAS  PubMed  Google Scholar 

  47. Baker F, Denniston M, Hann D, Gesme D, Reding DJ, Flynn T, et al. Factor structure and concurrent validity of the satisfaction with life domains scale for cancer (SLDS-C). J Psychosoc Oncol. 2007;25(2):1–17.

    Article  PubMed  Google Scholar 

  48. Bottomley A, Pe M, Sloan J, Basch E, Bonnetain F, Calvert M, et al. Analysing data from patient-reported outcome and quality of life endpoints for cancer clinical trials: a start in setting international standards. Lancet Oncol. 2016;17(11):e510–4. https://doi.org/10.1016/S1470-2045(16)30510-1.

    Article  PubMed  Google Scholar 

  49. US Food and Drug Administration. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims. Silver Spring, MD. 2009.

  50. European Medicines Agency Committee for Medicinal Products for Human Use. 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 EMA/CHMP/292464/2014. London, England. 2016.

  51. Bottomley A, Reijneveld JC, Koller M, Flechtner H, Tomaszewski KA, Greimel E. Current state of quality of life and patient-reported outcomes research. Eur J Cancer. 2019;121:55–63. https://doi.org/10.1016/j.ejca.2019.08.016.

    Article  PubMed  Google Scholar 

  52. Lisy K, Ly L, Kelly H, Clode M, Jefford M. How do we define and measure optimal care for cancer survivors? An online modified reactive Delphi study. Cancers (Basel). 2021;13(10):2299. https://doi.org/10.3390/cancers13102299.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Calvert M, Kyte D, Mercieca-Bebber R, Slade A, Chan AW, King MT, et al. Guidelines for inclusion of patient-reported outcomes in clinical trial protocols: the SPIRIT-PRO extension. JAMA. 2018;319(5):483–94. https://doi.org/10.1001/jama.2017.21903.

    Article  PubMed  Google Scholar 

  54. Cuzick J. Statistical controversies in clinical research: long-term follow-up of clinical trials in cancer. Ann Oncol. 2015;26(12):2363–6. https://doi.org/10.1093/annonc/mdv392.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  55. Ye M, Du K, Zhou J, Zhou Q, Shou M, Hu B, et al. A meta-analysis of the efficacy of cognitive behavior therapy on quality of life and psychological health of breast cancer survivors and patients. Psychooncology. 2018;27(7):1695–703. https://doi.org/10.1002/pon.4687.

    Article  PubMed  Google Scholar 

  56. Kim SH, Kim K, Mayer DK. Self-management intervention for adult cancer survivors after treatment: a systematic review and meta-analysis. Oncol Nurs Forum. 2017;44(6):719–28. https://doi.org/10.1188/17.Onf.719-728.

    Article  PubMed  Google Scholar 

  57. Duncan M, Moschopoulou E, Herrington E, Deane J, Roylance R, Jones L, et al. Review of systematic reviews of non-pharmacological interventions to improve quality of life in cancer survivors. BMJ Open. 2017;7(11): e015860. https://doi.org/10.1136/bmjopen-2017-015860.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Jefford M, Ward AC, Lisy K, Lacey K, Emery JD, Glaser AW, et al. Patient-reported outcomes in cancer survivors: a population-wide cross-sectional study. Support Care Cancer. 2017;25(10):3171–9. https://doi.org/10.1007/s00520-017-3725-5.

    Article  PubMed  Google Scholar 

  59. Van de Poll-Franse LV, Horevoorts N, Eenbergen MV, Denollet J, Roukema JA, Aaronson NK, 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(14):2188–94.

    Article  PubMed  Google Scholar 

  60. Halpern MT, Argenbright KE. Evaluation of effectiveness of survivorship programmes: how to measure success? Lancet Oncol. 2017;18(1):e51–9. https://doi.org/10.1016/S1470-2045(16)30563-0.

    Article  PubMed  Google Scholar 

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Acknowledgements

We would like to thank all of the cancer survivors for their willingness to participate in this study. We also thank Johannes Giesinger for his statistical advice and Imogen Ramsey for her advice on the Delphi Study.

EORTC survivorship questionnaire development group (in alphabetical order)

Neil K. Aaronson, Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands

Maria Antonietta Annunziata, Unit of Oncological Psychology, Centro di Riferimento Oncologico di Aviano (CRO) IRCCS, Aviano, Italy

Volker Arndt, Unit of Cancer Survivorship Research, Division of Clinical Epidemiology and Aging Research & Epidemiological Cancer Registry Baden-Württemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany

Juan Ignacio Arraras, Oncology Departments, Complejo Hospitalario de Navarra, Pamplona, Pamplona, Spain

Didier Autran, Pôle Neurosciences Cliniques, Service de Neuro-Oncologie, Aix-Marseille Université, Marseille, France

Hira Bani Hani, King Hussein Cancer Center, Amman, Jordan

Manas Chakrabarti, Columbia Asia Hospital, Kolkata, India

Olivier Chinot, Pôle Neurosciences Cliniques, Service de Neuro-Oncologie, Aix-Marseille Université, Marseille, France

Juhee Cho, Center for Clinical Epidemiology and Cancer Education Center, Samsung Medical Center, School of Medicine Sungkyunkwan University, Seoul, Korea

Rene Aloisio da Costa Vieira,, Postgraduate Program in Oncology, Barretos Cancer Hospital, Barretos, São Paulo, Brazil

Anne-Sophie Darlington, School of Health Sciences, University of Southampton, UK

Philip R. Debruyne, Kortrijk Cancer Centre, General Hospital Groeninge, Kortrijk, Belgium

Linda Dirven, Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands

Daniela Doege, Unit of Cancer Survivorship Research, Division of Clinical Epidemiology and Aging Research & Epidemiological Cancer Registry Baden-Württemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany

Yannick Eller, Centre for Medical Education, University of Dundee (UK)

Martin Eichler, National Center for Tumor Diseases (NCT/UCC), University Hospital Carl Gustav Carus Dresden, Dresden, Germany

Nanna Friðriksdóttir, National University Hospital of Iceland

Ugo De Giorgi, Department of Medical Oncology, IRCCS Istituto Romagnolo per lo Studio dei Tumori (IRST) "Dino Amadori", Meldola 47014, Italy

Ioannis Gioulbasanis, Chemotherapy Department, Larissa General Clinic “E Patsidis”, Athens, Greece

Eva Hammerlid, Department of Otolaryngology Head and Neck Surgery Sahlgrenska University Hospital, Göteborg, Sweden

Mieke van Hemelrijck Translational Oncology & Urology Research (TOUR), School of Cancer and Pharmaceutical Sciences, King’s College London, UK

Silke Hermann, Epidemiological Cancer Registry Baden-Württemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany

Olga Husson Division of Clinical Studies, Institute of Cancer Research, London, UK

Michael Jefford, Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Australia

Christoffer Johansen, Oncology clinic, Finsen Center, Copenhagen

Colin Johnson, University Surgical Unit, University Hospitals Southampton, Southampton, UK

Jacobien M Kieffer, Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands

Trille Kristina Kjaer, Survivorship and Inequality in Cancer, Danish Cancer Society Research Center, Copenhagen, Denmark

Meropi Kontogianni, Department of Nutrition & Dietetics, School of Health Sciences and Education, Harokopio University, Athens, Greece

Pernilla Lagergren,Department of Molecular medicine and Surgery, Karolinska Institutet, Stockholm, Sweden

Marieke van Leeuwen, Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands

Emma Lidington, The Royal Marsden NHS Foundation Trust, London, UK

Karolina Lisy, Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Australia

Ofir Morag, Oncology Institute, Chaim Sheba Medical Center, Tel-Hashomer, Israel

Andy Nordin, East Kent Gynaecological Oncology Centre, Margate, UK

Amal S.H. Al Omari, King Hussein Cancer Center, Amman, Jordan

Andrea Pace, Neuroncology Unit, National Cancer Institute Regina Elena, Rome, Italy

Silvia De Padova, Psycho-Oncology Unit, IRCCS Istituto Romagnolo per lo Studio dei Tumori (IRST) “Dino Amadori” 47014 Meldola, Italy

Duska Petranoviæ, Hematology Department, University Clinical Hospital Center Rijeka, Medical faculty University of Rijeka, Rijeka, Croatia

Monica Pinto, Rehabilitation Medicine Unit, Department of StrategicStrategic Health Services , Istituto Nazionale Tumori – IRCCS—Fondazione G. Pascale , Naples, Italy

Lonneke V. van de Poll-Franse, Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands

John Ramage, Department of Gastroenterology and Hepatology, Hampshire Hospitals NHS Foundation Trust, Basingstoke, UK

Elke Rammant, Translational Oncology & Urology Research (TOUR), School of Cancer and Pharmaceutical Sciences, King’s College London, UK

Jaap Reijneveld, Department of Neurology and Brain Tumor Center Amsterdam, Amsterdam UMC, Amsterdam, The Netherlands

Samantha Serpentini, Unit of Psychoncology—Breast Unit, Istituto Oncologico Veneto (IOV)-IRCCS, Padua, Italy

Sam Sodergren, School of Health Sciences, University of Southampton, UK

Vassilios Vassiliou, Department of Radiation Oncology, Bank of Cyprus Oncology Centre, Nicosia, Cyprus

Irma Verdonck-de Leeuw, Department of Otolaryngology / Head & Neck Surgery, Amsterdam UMC, Amsterdam, The Netherlands

Ingvild Vistad, Department of Gynecology and Obstetrics, Sorlandet Hospital Kristiansand, Norway

Teresa Young, Lynda Jackson Macmillan Centre, Mount Vernon Cancer Centre, Northwood, UK

Funding

This study was funded by the a grant from the European Organisation for Research and Treatment of Cancer Quality of Life Group (006/2016).

Author information

Author notes

  1. Neil K. Aaronson and Lonneke V. van de Poll-Franse contributed equally to this work.

Authors and Affiliations

  1. Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands

    Marieke van Leeuwen, Jacobien M. Kieffer, Neil K. Aaronson & Lonneke V. van de Poll-Franse

  2. Lynda Jackson Macmillan Centre, North Hertfordshire NHS Trust Including Mount Vernon Cancer Centre, East &, Northwood, UK

    Teresa E. Young

  3. Unit of Oncological Psychology, Centro di Riferimento Oncologico di Aviano (CRO) IRCCS, Aviano, Italy

    Maria Antonietta Annunziata

  4. Unit of Cancer Survivorship Research, Division of Clinical Epidemiology and Aging Research & Epidemiological Cancer Registry Baden-Wurttemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany

    Volker Arndt & Daniela Doege

  5. Oncology Departments, Complejo Hospitalario de Navarra, Pamplona, Spain

    Juan Ignacio Arraras

  6. Pole Neurosciences Cliniques, Service de Neuro-Oncologie, Aix-Marseille Universite, Marseille, France

    Didier Autran & Olivier Chinot

  7. King Hussein Cancer Center, Amman, Jordan

    Hira Bani Hani & Amal S.H. Al Omari

  8. Columbia Asia Hospital, Kolkata, India

    Manas Chakrabarti

  9. Center for Clinical Epidemiology and Cancer Education Center, Samsung Medical Center, School of Medicine Sungkyunkwan University, Seoul, Korea

    Juhee Cho

  10. Postgraduate Program in Oncology, Barretos Cancer Hospital, Sao Paulo, Barretos, Brazil

    Rene Aloisio da Costa Vieira

  11. School of Health Sciences, University of Southampton, Southampton, UK

    Anne-Sophie Darlington & Sam Sodergren

  12. Kortrijk Cancer Centre, General Hospital Groeninge, Kortrijk, Belgium

    Philip R. Debruyne

  13. Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands

    Linda Dirven

  14. Centre for Medical Education, University of Dundee, Dundee, UK

    Yannick Eller

  15. National Center for Tumor Diseases (NCT/UCC), University Hospital Carl Gustav Carus Dresden, Dresden, Germany

    Martin Eichler

  16. National University Hospital of Iceland, Ugo De Giorgi, Department of Medical Oncology, IRCCS Istituto Romagnolo per lo Studio dei Tumori (IRST) “Dino Amadori”, Meldola, 47014, Italy

    Nanna Fridriksdottir

  17. Chemotherapy Department, Larissa General Clinic “E Patsidis”, Athens, Greece

    Ioannis Gioulbasanis

  18. Department of Otolaryngology, Head and Neck Surgery, Sahlgrenska University Hospital, Goteborg, Sweden

    Eva Hammerlid

  19. Translational Oncology & Urology Research (TOUR), School of Cancer and Pharmaceutical Sciences, King’s College London, London, UK

    Mieke van Hemelrijck & Elke Rammant

  20. Epidemiological Cancer Registry Baden-Wurttemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany

    Silke Hermann

  21. Division of Clinical Studies, Institute of Cancer Research, London, UK

    Olga Husson

  22. Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Australia

    Michael Jefford & Karolina Lisy

  23. Oncology Clinic, Finsen Center, Copenhagen Colin Johnson, University Surgical Unit, University Hospitals Southampton, Southampton, UK

    Christoffer Johansen

  24. Survivorship and Inequality in Cancer, Danish Cancer Society Research Center, Copenhagen, Denmark

    Trille Kristina Kjaer

  25. Department of Nutrition & Dietetics, School of Health Sciences and Education, Harokopio University, Athens, Greece

    Meropi Kontogianni

  26. Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden

    Pernilla Lagergren

  27. The Royal Marsden NHS Foundation Trust, London, UK

    Emma Lidington

  28. Oncology Institute, Chaim Sheba Medical Center, Tel-Hashomer, Israel

    Ofir Morag

  29. East Kent Gynaecological Oncology Centre, Margate, UK

    Andy Nordin

  30. Neuroncology Unit, National Cancer Institute Regina Elena, Rome, Italy

    Andrea Pace

  31. Psycho-Oncology Unit, IRCCS Istituto Romagnolo per lo Studio dei Tumori (IRST) “Dino Amadori”, Meldola, 47014, Italy

    Silvia De Padova

  32. Hematology Department, University Clinical Hospital Center Rijeka, Medical Faculty University of Rijeka, Rijeka, Croatia

    Duska Petranovia

  33. Rehabilitation Medicine Unit, Department of Strategic Health Services, Istituto Nazionale Tumori-IRCCS-Fondazione G. Pascale, Naples, Italy

    Monica Pinto

  34. Department of Gastroenterology and Hepatology, Hampshire Hospitals NHS Foundation Trust, Basingstoke, UK

    John Ramage

  35. Department of Neurology and Brain Tumor Center Amsterdam, Amsterdam UMC, Amsterdam, The Netherlands

    Jaap Reijneveld

  36. Unit of Psychoncology—Breast Unit, Istituto Oncologico Veneto (IOV)-IRCCS, Padua, Italy

    Samantha Serpentini

  37. Department of Radiation Oncology, Bank of Cyprus Oncology Centre, Nicosia, Cyprus

    Vassilios Vassiliou

  38. Department of Otolaryngology / Head & Neck Surgery, Amsterdam UMC, Amsterdam, The Netherlands

    Irma Verdonck-de Leeuw

  39. Department of Gynecology and Obstetrics, Sorlandet Hospital Kristiansand, Kristiansand, Norway

    Ingvild Vistad

  40. Lynda Jackson Macmillan Centre, Mount Vernon Cancer Centre, Northwood, UK

    Teresa Young

Authors
  1. Marieke van Leeuwen
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  2. Jacobien M. Kieffer
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  3. Teresa E. Young
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  4. Maria Antonietta Annunziata
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  47. Teresa Young
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  48. Neil K. Aaronson
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  49. Lonneke V. van de Poll-Franse
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Consortia

on behalf of the EORTC QLG

Contributions

All authors contributed to the study conception and design. Material preparation performed by Marieke van Leeuwen, Neil Aaronson, Lonneke van de Poll-Franse, and Teresa Young. Data analysis was carried out by Marieke van Leeuwen, Neil Aaronson, Jacobien Kieffer, and Lonneke van de Poll-Franse. All authors, except for Neil Aaronson, Jacobien Kieffer, and Lonneke van de Poll-Franse, participated in data collection. The first draft of the manuscript was written by Marieke van Leeuwen, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Marieke van Leeuwen.

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Ethics approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Institutional Review Board of the Netherlands Cancer Institute; M17QOL) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

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Not applicable.

Conflict of interest

The authors declare no competing interests.

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van Leeuwen, M., Kieffer, J.M., Young, T.E. et al. Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire. J Cancer Surviv 17, 1111–1130 (2023). https://doi.org/10.1007/s11764-021-01160-1

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  • DOI: https://doi.org/10.1007/s11764-021-01160-1

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