Middle to Older Age Latinas Experiences Across the Cervical Cancer Continuum: Screening, Diagnosis, Treatment and Impact

Background: There is growing urgency for cervical cancer prevention among middle to older women nationally and internationally. Cervical cancer screening rates among middle to older age Latinas (>45yrs) - roughly 6.5 million people in the U.S. – lag behind.

Objective(s): Understand the unique lived experiences of Latinas with cervical cancer over 45 years old across the cancer care continuum.

Methods: In-depth semi-structured interviews using the Database of Individual Patient Experiences (DIPEx) methodology. Participants were recruited via electronic healthcare records, community tabling events, and social media efforts. Verbatim transcripts in English and Spanish were analyzed in NVivo 14. Our Community Advisory Board (CAB) guided this work.

Results: A total of 23 audio-video interviews were collected (57 hours: 1,968 miles traveled). About 90% were either currently or formerly undocumented, 2/3 spoke Spanish, 2/3 made <$50,000 annually, and 1/3 reported inadequate transportation.

Cancer Prevention: Little to no awareness or information about cervical cancer.

Cancer Screening: Challenges with making appointments and getting PAP Smears due to time, employment, transportation, and lack of established primary care provider.

Diagnosis: About 1/3 of the women ended up in the emergency department and received their diagnosis there, others because of encouragement from family and friends to get treated went to get a PAP smear and found advance cervical cancer diagnosed. Only a few received stage 1 diagnoses.

Treatment: hysterectomy, radiation, and chemo were reported with a need for more trauma-informed and better communication for shared decision making. Finally, survivorship: nearly all the women reported worrying about it coming back and living in uncertainty with many reporting having less sexual intercourse and/or avoiding it completely.

Conclusions: This is one of the few studies that investigates the experiences of a particular group across the entire cancer continuum offering an in-depth look at before, during, and after cervical cancer. Furthermore, the need for an intersectional lens is critical given that many women were also immigrant, Spanish speaking, and often from lower education and socio-economic status. There remains many areas of opportunity to improve Latina's cervical cancer experiences.