Y Louise Wan1, Rachel Beverley-Stevenson2, Daloni Carlisle2, Sinead Clarke2, Richard J Edmondson1, Steve Glover3, Julie Holland2, Carol Hughes2, Henry C Kitchener1, Sarah Kitson1, Tracie Miles2, Richard Morley4, Jo Morrison2, Linsey Nelson1, Melanie Powell2, Laura Sadler2, Anne Tomlinson2, Katharine Tylko-Hill2, Jo Whitcombe3, Emma J Crosbie5. 1. Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK. 2. Womb Cancer Alliance Priority Setting Partnership Study Group, UK. 3. Womb Cancer Alliance Priority Setting Partnership Study Group, UK; Trust Library, Central Manchester University Hospitals NHS Foundation Trust, Oxford Road, Manchester M13 9WL, UK. 4. Womb Cancer Alliance Priority Setting Partnership Study Group, UK; James Lind Alliance, National Institute for Health Research Evaluation Trials and Studies Coordinating Centre, Southampton, UK. 5. Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK. Electronic address: emma.crosbie@manchester.ac.uk.
Abstract
BACKGROUND: Endometrial cancer (EC) is the most common gynaecological cancer in developed nations and its incidence is rising. As a direct consequence, more women are dying from EC despite advances in care and improved survivorship. There is a lack of research activity and funding, as well as public awareness about EC. We sought to engage patients, carers and healthcare professionals to identify the most important unanswered research questions in EC. METHODOLOGY: The priority setting methodology was developed by the James Lind Alliance and involved four key stages: gathering research questions; checking these against existing evidence; interim prioritisation; and a final consensus meeting during which the top ten unanswered research questions were agreed using modified nominal group methodology. RESULTS: Our first online survey yielded 786 individual submissions from 413 respondents, of whom 211 were EC survivors or carers, and from which 202 unique unanswered research questions were generated. 253 individuals, including 108 EC survivors and carers, completed an online interim prioritisation survey. The resulting top 30 questions were ranked in a final consensus meeting. Our top ten spanned the breadth of patient experience of this disease and included developing personalised risk scoring, refining criteria for specialist referral, understanding the underlying biology of different types of EC, developing novel personalised treatment and prevention strategies, prognostic and predictive biomarkers, increasing public awareness and interventions for psychological issues. CONCLUSION: Having established the top ten unanswered research questions in EC, we hope this galvanises researchers, healthcare professionals and the public to collaborate, coordinate and invest in research to improve the lives of women affected by EC.
BACKGROUND: Endometrial cancer (EC) is the most common gynaecological cancer in developed nations and its incidence is rising. As a direct consequence, more women are dying from EC despite advances in care and improved survivorship. There is a lack of research activity and funding, as well as public awareness about EC. We sought to engage patients, carers and healthcare professionals to identify the most important unanswered research questions in EC. METHODOLOGY: The priority setting methodology was developed by the James Lind Alliance and involved four key stages: gathering research questions; checking these against existing evidence; interim prioritisation; and a final consensus meeting during which the top ten unanswered research questions were agreed using modified nominal group methodology. RESULTS: Our first online survey yielded 786 individual submissions from 413 respondents, of whom 211 were EC survivors or carers, and from which 202 unique unanswered research questions were generated. 253 individuals, including 108 EC survivors and carers, completed an online interim prioritisation survey. The resulting top 30 questions were ranked in a final consensus meeting. Our top ten spanned the breadth of patient experience of this disease and included developing personalised risk scoring, refining criteria for specialist referral, understanding the underlying biology of different types of EC, developing novel personalised treatment and prevention strategies, prognostic and predictive biomarkers, increasing public awareness and interventions for psychological issues. CONCLUSION: Having established the top ten unanswered research questions in EC, we hope this galvanises researchers, healthcare professionals and the public to collaborate, coordinate and invest in research to improve the lives of women affected by EC.
Authors: Sarah J Kitson; Olivia Aurangzeb; Jawaria Parvaiz; Artitaya Lophatananon; Kenneth R Muir; Emma J Crosbie Journal: Cancer Prev Res (Phila) Date: 2022-09-01
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Authors: Sarah Kitson; Neil Ryan; Michelle L MacKintosh; Richard Edmondson; James Mn Duffy; Emma J Crosbie Journal: Cochrane Database Syst Rev Date: 2018-02-01