Development and testing of a tailored online fertility preservation decision aid for female cancer patients.

BACKGROUND: Decision making regarding future fertility can be very difficult for female cancer patients. To support patients in decision making, fertility preservation decision aids (DAs) are being developed. However, to make a well-informed decision, patients need personalized information tailored to their cancer type and treatment. Tailored cancer-specific DAs are not available yet. METHODS: Our DA was systematically developed by a multidisciplinary steering group (n = 21) in an iterative process of draft development, three rounds of alpha testing, and revisions. The drafts were based on current guidelines, literature, and patients' and professionals' needs. RESULTS: In total, 24 cancer-specific DAs were developed. In alpha testing, cancer survivors and professionals considered the DA very helpful in decision making, and scored an 8.5 (scale 1-10). In particular, the cancer-specific information and the tool for recognizing personal values were of great value. Revisions were made to increase readability, personalization, usability, and be more careful in giving any false hope. CONCLUSIONS: A fertility preservation DA containing cancer-specific information is important in the daily care of female cancer patients and should be broadly available. Our final Dutch version is highly appraised, valid, and usable in decision making. After evaluating its effectiveness with newly diagnosed patients, the DA can be translated and adjusted according to (inter)national guidelines.

Retrospective validation study of miniPIERS prediction model in Zanzibar.

OBJECTIVE: To perform a retrospective external validation of miniPIERS in Zanzibar's referral hospital. METHODS: From February to December 2017, data were collected retrospectively on all cases of hypertensive disorders of pregnancy (HDP) admitted to Mnazi Mmoja Hospital, Zanzibar, Tanzania. The primary outcome was the predictive performance of miniPIERS by examining measures of discrimination, calibration, and stratification accuracy. The secondary outcome was the applicability of miniPIERS within the referral hospital setting. RESULTS: During this period, 2218 of 13 395 (21%) patients were identified with HDP, of whom 594 met the inclusion criteria. Sixty per cent of patients with adverse outcomes were excluded because they had experienced one of the adverse outcomes before admission. The discriminative ability of miniPIERS was inaccurate. It was not likely to aid risk stratification because of low sensitivity and low positive predictive value. The model showed fair discrimination in HDP before 34 weeks of gestation (area under the receiver operating characteristics curve 0.72, 95% confidence interval 0.63-0.82). CONCLUSIONS: The benefit of miniPIERS appeared to be limited, although clinical conditions make any validation challenging. Its application for risk stratification in preterm pregnancies should be further investigated.