Naj Ryan1,2, M Nobes3, D Sedgewick4, S-N Teoh5, D G Evans1,6, E J Crosbie2,7. 1. Division of Evolution and Genomic Medicine, St Mary's Hospital, University of Manchester, Manchester, UK. 2. Division of Cancer Sciences, Faculty of Biology, Medicine and Health, University of Manchester, St Mary's Hospital, Manchester, UK. 3. Severn Post Graduate Medical Education Foundation School, Bristol, UK. 4. Patient representative, Manchester, UK. 5. University of Manchester Medical School, Manchester, UK. 6. Manchester Centre for Genomic Medicine, Central Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK. 7. Division of Gynaecology, St. Mary's Hospital, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK.
Abstract
OBJECTIVE: To describe the current testing practice, referral pathways and gynaecological services available to women with Lynch syndrome (LS) in the UK. DESIGN: Cross-sectional nationwide survey of gynaecological oncologists and women with LS. SETTING: United Kingdom. METHODS: Gynaecological oncologists were contacted directly. Women with LS were identified from national and regional clinical databases and the patient support group, Lynch syndrome UK. MAIN OUTCOME MEASURES: Gynaecological oncologists were asked to report rates of LS testing and current practice regarding risk-reducing strategies and gynaecological surveillance for women with LS. Women with LS were asked to describe their experiences of gynaecological care. RESULTS: In total, 41 gynaecological oncologists and 298 women with LS responded to the survey. Of the gynaecological oncologists surveyed, 37% were unfamiliar with any clinical guidelines for the management of LS. Only 29% of gynaecological oncologists supported universal testing of endometrial cancer for LS; one centre routinely performed such testing. In all, 83% said they perform risk-reducing gynaecological surgery and 43% were aware of a local gynaecological surveillance service for women with LS. Of women with LS, most had undergone a hysterectomy (n = 191/64.1%), most frequently to reduce their gynaecological cancer risk (n = 86/45%). A total of 10% were initially referred for LS testing by their gynaecologist and 55% of those eligible regularly attended gynaecological surveillance; however, 62% wanted more regular surveillance. Regional variation was evident across all standards of care. CONCLUSIONS: There is widespread variation in the services offered to women with LS in the UK. As a community, gynaecological oncologists should move towards a nationally agreed provision of services. TWEETABLE ABSTRACT: A mismatch in care for mismatch repair. Survey finds significant variation in gynaecological care for #Lynchsyndrome in the UK.
OBJECTIVE: To describe the current testing practice, referral pathways and gynaecological services available to women with Lynch syndrome (LS) in the UK. DESIGN: Cross-sectional nationwide survey of gynaecological oncologists and women with LS. SETTING: United Kingdom. METHODS: Gynaecological oncologists were contacted directly. Women with LS were identified from national and regional clinical databases and the patient support group, Lynch syndrome UK. MAIN OUTCOME MEASURES: Gynaecological oncologists were asked to report rates of LS testing and current practice regarding risk-reducing strategies and gynaecological surveillance for women with LS. Women with LS were asked to describe their experiences of gynaecological care. RESULTS: In total, 41 gynaecological oncologists and 298 women with LS responded to the survey. Of the gynaecological oncologists surveyed, 37% were unfamiliar with any clinical guidelines for the management of LS. Only 29% of gynaecological oncologists supported universal testing of endometrial cancer for LS; one centre routinely performed such testing. In all, 83% said they perform risk-reducing gynaecological surgery and 43% were aware of a local gynaecological surveillance service for women with LS. Of women with LS, most had undergone a hysterectomy (n = 191/64.1%), most frequently to reduce their gynaecological cancer risk (n = 86/45%). A total of 10% were initially referred for LS testing by their gynaecologist and 55% of those eligible regularly attended gynaecological surveillance; however, 62% wanted more regular surveillance. Regional variation was evident across all standards of care. CONCLUSIONS: There is widespread variation in the services offered to women with LS in the UK. As a community, gynaecological oncologists should move towards a nationally agreed provision of services. TWEETABLE ABSTRACT: A mismatch in care for mismatch repair. Survey finds significant variation in gynaecological care for #Lynchsyndrome in the UK.
Authors: Mev Dominguez-Valentin; Toni T Seppälä; Christoph Engel; Stefan Aretz; Finlay Macrae; Ingrid Winship; Gabriel Capella; Huw Thomas; Eivind Hovig; Maartje Nielsen; Rolf H Sijmons; Lucio Bertario; Bernardo Bonanni; Maria Grazia Tibiletti; Giulia Martina Cavestro; Miriam Mints; Nathan Gluck; Lior Katz; Karl Heinimann; Carlos A Vaccaro; Kate Green; Fiona Lalloo; James Hill; Wolff Schmiegel; Deepak Vangala; Claudia Perne; Hans-Georg Strauß; Johanna Tecklenburg; Elke Holinski-Feder; Verena Steinke-Lange; Jukka-Pekka Mecklin; John-Paul Plazzer; Marta Pineda; Matilde Navarro; Joan Brunet Vidal; Revital Kariv; Guy Rosner; Tamara Alejandra Piñero; María Laura Gonzalez; Pablo Kalfayan; Julian R Sampson; Neil A J Ryan; D Gareth Evans; Pål Møller; Emma J Crosbie Journal: J Clin Med Date: 2020-07-18 Impact factor: 4.241
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Authors: Toni T Seppälä; Mev Dominguez-Valentin; Emma J Crosbie; Christoph Engel; Stefan Aretz; Finlay Macrae; Ingrid Winship; Gabriel Capella; Huw Thomas; Eivind Hovig; Maartje Nielsen; Rolf H Sijmons; Lucio Bertario; Bernardo Bonanni; Maria G Tibiletti; Giulia M Cavestro; Miriam Mints; Nathan Gluck; Lior Katz; Karl Heinimann; Carlos A Vaccaro; Kate Green; Fiona Lalloo; James Hill; Wolff Schmiegel; Deepak Vangala; Claudia Perne; Hans-Georg Strauß; Johanna Tecklenburg; Elke Holinski-Feder; Verena Steinke-Lange; Jukka-Pekka Mecklin; John-Paul Plazzer; Marta Pineda; Matilde Navarro; Joan B Vida; Revital Kariv; Guy Rosner; Tamara A Piñero; Walter Pavicic; Pablo Kalfayan; Sanne W Ten Broeke; Mark A Jenkins; Lone Sunde; Inge Bernstein; John Burn; Marc Greenblatt; Wouter H de Vos Tot Nederveen Cappel; Adriana Della Valle; Francisco Lopez-Koestner; Karin Alvarez; Reinhard Büttner; Heike Görgens; Monika Morak; Stefanie Holzapfel; Robert Hüneburg; Magnus von Knebel Doeberitz; Markus Loeffler; Silke Redler; Jürgen Weitz; Kirsi Pylvänäinen; Laura Renkonen-Sinisalo; Anna Lepistö; John L Hopper; Aung K Win; Noralane M Lindor; Steven Gallinger; Loïc Le Marchand; Polly A Newcomb; Jane C Figueiredo; Stephen N Thibodeau; Christina Therkildsen; Karin A W Wadt; Marian J E Mourits; Zohreh Ketabi; Oliver G Denton; Einar A Rødland; Hans Vasen; Florencia Neffa; Patricia Esperon; Douglas Tjandra; Gabriela Möslein; Erik Rokkones; Julian R Sampson; D G Evans; Pål Møller Journal: Eur J Cancer Date: 2021-03-17 Impact factor: 9.162