Samantha C Sodergren1, Colin D Johnson2, Alexandra Gilbert3, Krzysztof A Tomaszewski4, William Chu5, Hans T Chung5, Kristopher Dennis6, Isacco Desideri7, Robert Glynne-Jones8, Marianne Grønlie Guren9, Dimitrios Kardamakis10, Karen Nugent2, Heike Schmidt11, David Sebag-Montefiore3, Vassilios Vassiliou12. 1. Faculty of Health Sciences, University of Southampton, United Kingdom. 2. Cancer Sciences, University of Southampton, United Kingdom. 3. Leeds Radiotherapy Research Group, Leeds Institute of Cancer and Pathology University of Leeds and Leeds Cancer Centre, St James's University Hospital, United Kingdom. 4. Health Outcomes Research Unit, Department of Gerontology, Geriatrics and Social Work, Faculty of Education, Ignatianum Academy, Krakow, Poland. 5. Department of Radiation Oncology, Sunnybrook Odette Cancer Centre, University of Toronto, Canada. 6. Division of Radiation Oncology, The Ottawa Hospital and the University of Ottawa, Canada. 7. Radiotherapy Unit, Department of Experimental and Clinical Biomedical Sciences, University of Florence, Italy. 8. Centre for Cancer Treatment, Mount Vernon Hospital, Northwood, United Kingdom. 9. Dept. of Oncology and K.G. Jebsen Colorectal Cancer Research Centre, Oslo University Hospital, Norway. 10. University of Patras Medical School, Patras, Greece. 11. Institute for Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Saale, Germany. 12. Bank of Cyprus Oncology Centre, Nicosia, Cyprus.
Abstract
BACKGROUND AND PURPOSE: There is currently no health-related quality of life (HRQoL) measure specific to anal cancer. Our objective was to develop an anal cancer HRQoL module to supplement the EORTC QLQ-C30 questionnaire using EORTC Quality of Life Group Guidelines. MATERIALS AND METHOD: In order to generate a list of HRQoL issues facing anal cancer patients treated with chemoradiotherapy (CRT), we systematically reviewed the literature and conducted semi-structured interviews with patients and health care professionals (HCPs). Our list was then operationalised into questions using the EORTC Item Library. The provisional question list was pilot tested alongside the EORTC QLQ-C30 with patients from 11 centres across 8 countries. RESULTS: From our literature review and interviews with 43 patients, we generated a list of 197 issues. The list was then refined to 134 issues and reviewed by 34 HCPs and 10 patients. This review resulted in the retention of 65 issues which were used in the draft questionnaire tested by 100 patients. Our analyses led to the modification and removal of questions resulting in a 27 item questionnaire, the EORTC QLQ-ANL27. CONCLUSION: We have developed a 27 item questionnaire to supplement the EORTC QLQ-C30, for use with patients treated for anal cancer. This has been pilot tested and is now available upon request for use in clinical trials as well as clinical practice in 8 languages (http://groups.eortc.be/qol/).
BACKGROUND AND PURPOSE: There is currently no health-related quality of life (HRQoL) measure specific to anal cancer. Our objective was to develop an anal cancer HRQoL module to supplement the EORTC QLQ-C30 questionnaire using EORTC Quality of Life Group Guidelines. MATERIALS AND METHOD: In order to generate a list of HRQoL issues facing anal cancerpatients treated with chemoradiotherapy (CRT), we systematically reviewed the literature and conducted semi-structured interviews with patients and health care professionals (HCPs). Our list was then operationalised into questions using the EORTC Item Library. The provisional question list was pilot tested alongside the EORTC QLQ-C30 with patients from 11 centres across 8 countries. RESULTS: From our literature review and interviews with 43 patients, we generated a list of 197 issues. The list was then refined to 134 issues and reviewed by 34 HCPs and 10 patients. This review resulted in the retention of 65 issues which were used in the draft questionnaire tested by 100 patients. Our analyses led to the modification and removal of questions resulting in a 27 item questionnaire, the EORTC QLQ-ANL27. CONCLUSION: We have developed a 27 item questionnaire to supplement the EORTC QLQ-C30, for use with patients treated for anal cancer. This has been pilot tested and is now available upon request for use in clinical trials as well as clinical practice in 8 languages (http://groups.eortc.be/qol/).
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