Hereditary ovarian cancer risk reduction: a retrospective evaluation of patient perspectives and service provision at a regional hereditary gynaecologic cancer clinic 2006-2016.

BACKGROUND: Germline pathogenic variants in BRCA1/2 have been established in hereditary breast and ovarian cancer (HBOC) syndrome and result in significantly elevated lifetime risk of ovarian cancer. Risk reduction interventions are presently the only effective means of improving survival and specialized counselling clinics have been established as an effective means of aiding this population in navigating complex decisions surrounding these interventions. This study sought to evaluate patient perceptions of a specialized counselling clinic for patients with HBOC Syndrome and referral patterns to this clinic. METHODS: We completed a retrospective review of 200 patients with HBOC in Nova Scotia, Canada seen through Maritime Medical Genetics Services between 2006 and 2016. Data were collected on referral pattern to the Hereditary Gynaecologic Risk Reduction Clinic (HGRRC), demographics, health history, and uptake of risk-reducing interventions. Participants were invited to complete a questionnaire about their experience. RESULTS: 156/200(78%) women were referred to HGRCC and 135/156 (85.9%) of those referred attended their appointment. 124/200 (62%) were over age 40 at the time of testing. The mean time from referral to HGRCC appointment was 134.68 days (SD 85.78). 85/135 (63%) underwent risk-reducing bilateral salpingo-oophorectomy following their HGRCC appointment. The questionnaire was completed by 94/188 (50.3%) women. Most participants found information received from genetics clinics (81/94; 91%) and genetic counsellors (87/94; 95%) most helpful in making choices around risk-reduction strategies. 83/94 (88%) participants felt they had sufficient information to make an informed decision. CONCLUSION: The majority of women with HBOC in Nova Scotia during the study period were referred to and counselled through HGRRC. Genetic counselling was found most valuable in risk-reduction decision making, which highlights the importance of a multidisciplinary team. Patients viewed this clinic as an effective care model to support informed choice about risk-reducing intervention.

Association Between Real-time Electronic Injury Surveillance Applications and Clinical Documentation and Data Acquisition in a South African Trauma Center.

Importance: Collection and analysis of up-to-date and accurate injury surveillance data are a key step in the maturation of trauma systems. Trauma registries have proven to be difficult to establish in low- and middle-income countries owing to the burden of trauma volume, cost, and complexity. Objective: To determine whether an electronic trauma health record (eTHR) used by physicians can serve as simultaneous clinical documentation and data acquisition tools. Design, Setting, and Participants: This 2-part quality improvement study included (1) preimplementation and postimplementation eTHR study with assessments of satisfaction by 41 trauma physicians, time to completion, and quality of data collected comparing paper and electronic charting; and (2) prospective ecologic study describing the burden of trauma seen at a Level I trauma center, using real-time data collected by the eTHR on consecutive patients during a 12-month study period. The study was conducted from October 1, 2010, to September 30, 2011, at Groote Schuur Hospital, Cape Town, South Africa. Data analysis was performed from October 15, 2011, to January 15, 2013. Main Outcomes and Measures: The primary outcome of part 1 was data field competition rates of pertinent trauma registry items obtained through electronic or paper documentation. The main measures of part 2 were to identify risk factors to trauma in Cape Town and quality indicators recommended for trauma system evaluation at Groote Schuur Hospital. Results: The 41 physicians included in the study found the electronic patient documentation to be more efficient and preferable. A total of 11 612 trauma presentations were accurately documented and promptly analyzed. Fields relevant to injury surveillance in the eTHR (n = 11 612) had statistically significant higher completion rates compared with paper records (n = 9236) (for all comparisons, P < .001). The eTHR successfully captured quality indicators recommended for trauma system evaluation which were previously challenging to collect in a timely and accurate manner. Of the 11 612 patient admissions over the study period, injury location was captured 11 075 times (95.4%), injury mechanism 11 135 times (95.9%), systolic blood pressure 11 106 times (95.6%), and Glasgow Coma Scale 11 140 times (95.9%). These fields were successfully captured with statistically higher rates than previous paper documentation. Epidemiologic analysis confirmed a heavy burden of violence-related injury (51.8% of all injuries) and motor vehicle crash injuries (14.3% of all injuries). Mapping analysis demonstrated clusters of injuries originating mainly from vulnerable and low-income neighborhoods and their respective referring trauma facilities, Mitchell's Plain Hospital (734 [10.1%]), Guguletu Community Health Center (654 [9.0%]), and New Somerset Hospital (400 [5.5%]). Conclusions and Relevance: Accurate capture and simultaneous analysis of trauma data in low-resource trauma settings are feasible through the integration of surveillance into clinical workflow and the timely analysis of electronic data.