RESUMEN
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.
Asunto(s)
Neoplasias Colorrectales Hereditarias sin Poliposis/diagnóstico , Neoplasias Colorrectales Hereditarias sin Poliposis/terapia , Ginecología/organización & administración , Accesibilidad a los Servicios de Salud/organización & administración , Pautas de la Práctica en Medicina/estadística & datos numéricos , Derivación y Consulta/organización & administración , Servicios de Salud para Mujeres/organización & administración , Adulto , Anciano , Estudios Transversales , Femenino , Ginecología/estadística & datos numéricos , Encuestas de Atención de la Salud , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/estadística & datos numéricos , Humanos , Persona de Mediana Edad , Derivación y Consulta/estadística & datos numéricos , Medicina Estatal/organización & administración , Medicina Estatal/estadística & datos numéricos , Reino Unido , Servicios de Salud para Mujeres/estadística & datos numéricosRESUMEN
The diagnosis of visceral perforation during pregnancy is often delayed and the management complex. A 32-year-old primigravid woman in her second trimester presented with abdominal pain and a pre-existing ileoanal pouch. Initial imaging was negative but later imaging was suggestive of serious pathology. At laparotomy, a caesarean section was performed. Peritonitis was encountered secondary to two discrete perforations in the small bowel separate from her pouch. Histology found an ischaemic perforation secondary to a pressure effect from the gravid uterus. In pregnancy, ileoanal pouches may make the interconnected bowel vulnerable to the pressure effect of the gravid uterus and perforation. Pregnant women with such a surgical history who develop symptoms suggestive of bowel perforation should have rapid imaging and their clinical team should consider early definitive surgical intervention.