Academic Journal

Completeness and accuracy of national cancer and death registration for outcome ascertainment in trials-an ovarian cancer exemplar

التفاصيل البيبلوغرافية
العنوان: Completeness and accuracy of national cancer and death registration for outcome ascertainment in trials-an ovarian cancer exemplar
المؤلفون: Jatinderpal K Kalsi, Andy Ryan, Aleksandra Gentry-Maharaj, Danielle Margolin-Crump, Naveena Singh, Matthew Burnell, Elizabeth Benjamin, Sophia Apostolidou, Mariam Habib, Susan Massingham, Chloe Karpinskyj, Robert Woolas, Martin Widschwendter, Lesley Fallowfield, Stuart Campbell, Steven Skates, Alistair McGuire, Max Parmar, Ian Jacobs, Usha Menon
سنة النشر: 2021
المجموعة: University of Sussex (US): Figshare
مصطلحات موضوعية: Adjudication, Outcomes review, Ovarian cancer, Randomised controlled trial, Registry, Screening, UKCTOCS
الوصف: Background There is a trend to increasing use of routinely collected health data to ascertain outcome measures in trials. We report on the completeness and accuracy of national ovarian cancer and death registration in the United Kingdom Collaborative Trial of Ovarian Cancer Screening (UKCTOCS). Methods Of the 202,638 participants, 202,632 were successfully linked and followed through national cancer and death registries of Northern Ireland, Wales and England. Women with registrations of any of 19 pre-defined ICD-10 codes suggestive of tubo-ovarian cancer or notification of ovarian/tubal/peritoneal cancer from hospital episode statistics or trial sites were identified. Copies of hospital and primary care notes were retrieved and reviewed by an independent outcomes review committee. National registration of site and cause of death as ovarian/tubal/peritoneal cancer (C56/C57/C48) obtained up to 3 months after trial censorship was compared to that assigned by outcomes review (reference standard). Results Outcome review was undertaken in 3110 women on whom notification was received between 2001 and 2014. Ovarian cancer was confirmed in 1324 of whom 1125 had a relevant cancer registration. Sensitivity and specificity of ovarian/tubal/peritoneal cancer registration were 85.0% (1125/1324; 95% CI 83.7–86.2%) and 94.0% (1679/1786; 95% CI 93.2–94.8%), respectively. Of 2041 death registrations reviewed, 681 were confirmed to have a tubo-ovarian cancer of whom 605 had relevant death registration. Sensitivity and specificity were 88.8% (605/681; 95% CI 86.4–91.2%) and 96.7% (1482/1533, 95% CI 95.8–97.6%), respectively. When multiple electronic health record sources were considered, sensitivity for cancer site increased to 91.1% (1206/1324, 95% CI 89.4–92.5%) and for cause of death 94.0% (640/681, 95% CI 91.9–95.5%). Of 1232 with cancer registration, 8.7% (107/1232) were wrongly designated as ovarian/tubal/peritoneal cancers by the registry and 4.0% (47/1172) of confirmed tubo-ovarian cancers were mis-registered. In 656 with ...
نوع الوثيقة: article in journal/newspaper
اللغة: unknown
Relation: 10779/uos.23480078.v1; https://figshare.com/articles/journal_contribution/Completeness_and_accuracy_of_national_cancer_and_death_registration_for_outcome_ascertainment_in_trials-an_ovarian_cancer_exemplar/23480078
الاتاحة: https://figshare.com/articles/journal_contribution/Completeness_and_accuracy_of_national_cancer_and_death_registration_for_outcome_ascertainment_in_trials-an_ovarian_cancer_exemplar/23480078
Rights: CC BY 4.0
رقم الانضمام: edsbas.88FE5723
قاعدة البيانات: BASE