Drivers and barriers to information seeking: Qualitative research with advanced cervical cancer patients in the United States

Background: Patients diagnosed with persistent, recurrent, or metastatic cervical cancer (CC) may face uncertainty about treatment options, impact of treatment on health & quality of life (QoL), & available resources. This study provides insight into patient concerns & information seeking (IS) behaviors. Methods: In January 2021, semistructured telephone interviews were conducted in the US with CC patients (diagnosed within 2 years) recruited through panels, social media & advocacy groups. The interview focused on rational & emotional drivers and barriers for IS. Transcripts were coded using NVivo qualitative analysis software to identify key themes. Results: 14 women of varied education status were interviewed (mean age 51 years (range: 37-70);8 White, 4 Black, & 2 Latina). Patients emphasized trust in their oncologist to provide sufficient information. IS was driven by the desires to confirm their oncologist's recommendation & find reassurance through the experience of other patients, and encouragement from family. Barriers to IS included: 1) hesitancy to undermine their oncologist's recommendations, 2) pessimism about ability to find individualized answers about prognosis or QoL, 3) feeling overwhelmed & fearing misinformation, 4) personal urgency to decide on a treatment plan, 5) already having sufficient information, 6) potential exposure to 'negative energy' from online patient communities, & 7) COVID-19 hindering opportunity for personal connections. Conclusions: While patients' oncologist, family, & common patient experience provide comfort, reluctance towards IS exists. As trusted gatekeepers, oncologists should recognize patients' desire for accessible, reliable, & personalized information. Better understanding this perspective and gaps in the availability of validated & relevant resources can enable clinicians/policy makers to develop strategies & tools for better communication. In turn, this will help CC patients feel more empowered & informed throughout their cancer care journey.