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Clinical classifiers, trials and the patient voice

Thursday May 13, 2021 - 20:20 to 21:00

Room: Breakout

P-4.2 The patient voice: Understanding the experience of Canadian women living with ovarian cancer through The Every Woman Study

Alicia Tone, Canada

Scientific Advisor
Research
Ovarian Cancer Canada

Biography

Alicia joined the Ovarian Cancer Canada team as Scientific Advisor in May 2019, and became OvCAN Project Manager the following November. Her deep well of experience in the ovarian cancer field includes a Ph. D. in ovarian cancer biology from the University of Toronto, postdoctoral studies in ovarian cancer genomics at B.C. Cancer Agency, and more than seven years as Scientific Associate in the Division of Gynecologic Oncology at the Princess Margaret Cancer Centre.

Abstract

The patient voice: Understanding the experience of Canadian women living with ovarian cancer through The Every Woman Study

Alicia Tone1, Talin Boghosian1, Elisabeth Baugh1, Cailey Crawford1.

1Ovarian Cancer Canada, Toronto, ON, Canada

Introduction: The Every Woman Study: Canadian Edition aims to understand the experiences of women with ovarian cancer (OC) in how they access care and identify opportunities for improvement. 

Methods: An online survey was developed in both official languages, consisting of 112 questions covering the full continuum of care. The survey was open from Sept 28-Nov 6, 2020.

Results: Responses from 557 women from 11 provinces/territories were included in the final dataset. Average age at diagnosis was 53, 61% were diagnosed between 2016-20, 59% were stage III/IV and all types were represented (46% high-grade serous, 8% endometrioid, 7% clear cell, 7% low-grade serous, 2% mucinous, 6% sex-cord stromal, 1% germ cell). Overall, 23% reported a family history of OC, 75% had genetic testing and 19% had a pathogenic BRCA1/2 variant. Most (87%) had symptoms prior to diagnosis, with no difference by stage (p=0.74); 86% consulted a healthcare provider (HCP) about their symptoms, typically within 3 months. Three-quarters of initial HCPs ordered tests, most commonly abdominal ultrasound (62%), either right away (59%) or after further appointments (17%). Time to diagnosis from the first HCP visit was <3 months in 61% of cases; however, 13% waited >1 year. Comparison of patients with the longest (>1 year) vs. shortest (<1 month) times to diagnosis revealed a younger average age (48.6 vs. 54.8; p=0.0003), increased proportion of family doctors as initial HCP (79% vs. 48%; p<0.0001) and decreased proportion of ER/urgent care doctors as initial HCP (0% vs. 24%; p=0.0004) in the former group. Only 26% and 18% of respondents had been offered and had participated in clinical trials, respectively. Regional differences in times to diagnosis, use of neoadjuvant chemotherapy and PARP inhibitors, genetic testing rates and clinical trial participation were noted.

Conclusions: Our initial analysis revealed differences in care among Canadian women with OC, with region and initial HCP playing a role.

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