Marieke van Leeuwen1, Jacobien M Kieffer2, Teresa E Young3, Maria Antonietta Annunziata4, Volker Arndt5, Juan Ignacio Arraras6, Didier Autran7, Hira Bani Hani8, Manas Chakrabarti9, Olivier Chinot7, Juhee Cho10, Rene Aloisio da Costa Vieira11, Anne-Sophie Darlington12, Philip R Debruyne13, Linda Dirven14, Daniela Doege5, Yannick Eller15, Martin Eichler16, Nanna Fridriksdottir17, Ioannis Gioulbasanis18, Eva Hammerlid19, Mieke van Hemelrijck20, Silke Hermann21, Olga Husson22, Michael Jefford23, Christoffer Johansen24, Trille Kristina Kjaer25, Meropi Kontogianni26, Pernilla Lagergren27, Emma Lidington28, Karolina Lisy23, Ofir Morag29, Andy Nordin30, Amal S H Al Omari8, Andrea Pace31, Silvia De Padova32, Duska Petranovia33, Monica Pinto34, John Ramage35, Elke Rammant20, Jaap Reijneveld36, Samantha Serpentini37, Sam Sodergren12, Vassilios Vassiliou38, Irma Verdonck-de Leeuw39, Ingvild Vistad40, Teresa Young41, Neil K Aaronson2, Lonneke V van de Poll-Franse2. 1. Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands. m.v.leeuwen@nki.nl. 2. Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands. 3. Lynda Jackson Macmillan Centre, North Hertfordshire NHS Trust Including Mount Vernon Cancer Centre, East &, Northwood, UK. 4. Unit of Oncological Psychology, Centro di Riferimento Oncologico di Aviano (CRO) IRCCS, Aviano, Italy. 5. Unit of Cancer Survivorship Research, Division of Clinical Epidemiology and Aging Research & Epidemiological Cancer Registry Baden-Wurttemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany. 6. Oncology Departments, Complejo Hospitalario de Navarra, Pamplona, Spain. 7. Pole Neurosciences Cliniques, Service de Neuro-Oncologie, Aix-Marseille Universite, Marseille, France. 8. King Hussein Cancer Center, Amman, Jordan. 9. Columbia Asia Hospital, Kolkata, India. 10. Center for Clinical Epidemiology and Cancer Education Center, Samsung Medical Center, School of Medicine Sungkyunkwan University, Seoul, Korea. 11. Postgraduate Program in Oncology, Barretos Cancer Hospital, Sao Paulo, Barretos, Brazil. 12. School of Health Sciences, University of Southampton, Southampton, UK. 13. Kortrijk Cancer Centre, General Hospital Groeninge, Kortrijk, Belgium. 14. Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands. 15. Centre for Medical Education, University of Dundee, Dundee, UK. 16. National Center for Tumor Diseases (NCT/UCC), University Hospital Carl Gustav Carus Dresden, Dresden, Germany. 17. 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. 18. Chemotherapy Department, Larissa General Clinic "E Patsidis", Athens, Greece. 19. Department of Otolaryngology, Head and Neck Surgery, Sahlgrenska University Hospital, Goteborg, Sweden. 20. Translational Oncology & Urology Research (TOUR), School of Cancer and Pharmaceutical Sciences, King's College London, London, UK. 21. Epidemiological Cancer Registry Baden-Wurttemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany. 22. Division of Clinical Studies, Institute of Cancer Research, London, UK. 23. Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Australia. 24. Oncology Clinic, Finsen Center, Copenhagen Colin Johnson, University Surgical Unit, University Hospitals Southampton, Southampton, UK. 25. Survivorship and Inequality in Cancer, Danish Cancer Society Research Center, Copenhagen, Denmark. 26. Department of Nutrition & Dietetics, School of Health Sciences and Education, Harokopio University, Athens, Greece. 27. Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden. 28. , The Royal Marsden NHS Foundation Trust, London, UK. 29. Oncology Institute, Chaim Sheba Medical Center, Tel-Hashomer, Israel. 30. East Kent Gynaecological Oncology Centre, Margate, UK. 31. Neuroncology Unit, National Cancer Institute Regina Elena, Rome, Italy. 32. Psycho-Oncology Unit, IRCCS Istituto Romagnolo per lo Studio dei Tumori (IRST) "Dino Amadori", Meldola, 47014, Italy. 33. Hematology Department, University Clinical Hospital Center Rijeka, Medical Faculty University of Rijeka, Rijeka, Croatia. 34. Rehabilitation Medicine Unit, Department of Strategic Health Services, Istituto Nazionale Tumori-IRCCS-Fondazione G. Pascale, Naples, Italy. 35. Department of Gastroenterology and Hepatology, Hampshire Hospitals NHS Foundation Trust, Basingstoke, UK. 36. Department of Neurology and Brain Tumor Center Amsterdam, Amsterdam UMC, Amsterdam, The Netherlands. 37. Unit of Psychoncology-Breast Unit, Istituto Oncologico Veneto (IOV)-IRCCS, Padua, Italy. 38. Department of Radiation Oncology, Bank of Cyprus Oncology Centre, Nicosia, Cyprus. 39. Department of Otolaryngology / Head & Neck Surgery, Amsterdam UMC, Amsterdam, The Netherlands. 40. Department of Gynecology and Obstetrics, Sorlandet Hospital Kristiansand, Kristiansand, Norway. 41. Lynda Jackson Macmillan Centre, Mount Vernon Cancer Centre, Northwood, UK.
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.
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.
Authors: Morten Aa Petersen; Neil K Aaronson; Juan I Arraras; Wei-Chu Chie; Thierry Conroy; Anna Costantini; Linda Dirven; Peter Fayers; Eva-Maria Gamper; Johannes M Giesinger; Esther J J Habets; Eva Hammerlid; Jorunn Helbostad; Marianne J Hjermstad; Bernhard Holzner; Colin Johnson; Georg Kemmler; Madeleine T King; Stein Kaasa; Jon H Loge; Jaap C Reijneveld; Susanne Singer; Martin J B Taphoorn; Lise H Thamsborg; Krzysztof A Tomaszewski; Galina Velikova; Irma M Verdonck-de Leeuw; Teresa Young; Mogens Groenvold Journal: Eur J Cancer Date: 2018-06-21 Impact factor: 9.162
Authors: Marieke van Leeuwen; Olga Husson; Paola Alberti; Juan Ignacio Arraras; Olivier L Chinot; Anna Costantini; Anne-Sophie Darlington; Linda Dirven; Martin Eichler; Eva B Hammerlid; Bernhard Holzner; Colin D Johnson; Meropi Kontogianni; Trille Kristina Kjær; Ofir Morag; Sandra Nolte; Andrew Nordin; Andrea Pace; Monica Pinto; Katja Polz; John Ramage; Jaap C Reijneveld; Samantha Serpentini; Krzysztof A Tomaszewski; Vassilios Vassiliou; Irma M Verdonck-de Leeuw; Ingvild Vistad; Teresa E Young; Neil K Aaronson; Lonneke V van de Poll-Franse Journal: Health Qual Life Outcomes Date: 2018-06-04 Impact factor: 3.186
Authors: Pernilla Lagergren; Anna Schandl; Neil K Aaronson; Hans-Olov Adami; Francesco de Lorenzo; Louis Denis; Sara Faithfull; Lifang Liu; Franḉoise Meunier; Cornelia Ulrich Journal: Mol Oncol Date: 2019-01-08 Impact factor: 6.603
Authors: Johannes M Giesinger; Jacobien M Kieffer; Peter M Fayers; Mogens Groenvold; Morten Aa Petersen; Neil W Scott; Mirjam A G Sprangers; Galina Velikova; Neil K Aaronson Journal: J Clin Epidemiol Date: 2015-09-28 Impact factor: 6.437