1. A mismatch in care: results of a United Kingdom-wide patient and clinician survey of gynaecological services for women with Lynch syndrome.
- Author
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Ryan, NAJ, Nobes, M, Sedgewick, D, Teoh, S‐N, Evans, DG, Crosbie, EJ, Teoh, S-N, Evans, D G, and Crosbie, E J
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HEREDITARY nonpolyposis colorectal cancer ,WOMEN'S programs ,ONCOLOGISTS ,PATIENT surveys ,SUPPORT groups ,ENDOMETRIAL cancer - 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. [ABSTRACT FROM AUTHOR]- Published
- 2021
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