Lived experience of women diagnosed with a gynecologic cancer in the height of the COVID-19 pandemic in New York City (508)

Abstract

Objectives: The COVID-19 pandemic has had an unprecedented impact on cancer care delivery in New York City (NYC), as the primary care and oncology communities alike struggled to meet the needs of patients in a time of great uncertainty. The purpose of this study was to examine the lived experience and short-term cancer outcomes of patients in NYC who received new diagnoses of gynecologic cancer in the setting of COVID-19.Methods: We employed a mixed-methods research study design. Patients with a new diagnosis of a gynecologic malignancy on or after May 1, 2020, were identified from the review of inpatient and outpatient medical records. Demographic and clinical data were extracted from the electronic medical record. Participants were contacted by phone and recruited for 45-minute to 1-hour semi-structured qualitative phone interviews, which were recorded and transcribed. Initial codes were identified to organize the data. The transcripts were analyzed via close reading and memo notes, employing Braun and Clarke’s thematic analysis techniques to generate the initial set of codes. Using an inductive approach, these codes were then grouped, allowing for the identification of underlying themes. Certain themes were reviewed, collapsed and expanded, and placed into sub-themes based on their prevalence in the collected data.Results: Of the 72 patients meeting study criteria, 42 (58%) were diagnosed at either stage I or stage II (“early stage”), while the remaining 30 (42%) had progressed to stage III-IV by the time of diagnosis (“late-stage”). Primary uterine malignancy was most frequent, accounting for 50% of all subjects, followed by ovarian (25%), cervical (11%), vulvar (10%), and 1% each of vaginal, gestational trophoblastic neoplasia, and concurrent ovarian and uterine neoplasms. Uterine and cervical cancers were more likely to be diagnosed at an early stage, while ovarian cancer was more likely to be diagnosed at a late stage. Across all cancer types and all stages, an average of 5.25 months elapsed between the first symptom and first treatment. A total of five patients, all belonging to the late-stage subgroup, died within six months of their diagnosis. Three major themes arose from our interviews: 1) suboptimal gynecologic care pre-COVID-19, 2) lack of knowledge regarding gynecologic issues, and 3) heightened challenges during the COVID-19 pandemic in receiving care. All participants had not seen gynecologists for 2-10 years prior to their diagnosis. All were up to date on their primary care visits—all described friends and family who dismissed their concerns. Two patients reported seeking information on the internet and a lack of follow-up of abnormal tests. In the setting of the COVID-19 pandemic, patients reported economic challenges (employment instability, inability to pay rent), emotional challenges (no visits allowed during chemotherapy, no visitors in the home, personal connections to persons who died from COVID-19), and clinical challenges (delayed and canceled diagnostic testing and follow-up appointments, concern that an overwhelmed health system may have contributed to delay in diagnosis). Conclusions: Patients diagnosed with gynecologic malignancies in the height of the COVID-19 pandemic in NYC faced significant challenges in receiving care, exacerbating pre-existing barriers to care and contributing to delays in both diagnosis and treatment.