Information needs during cancer care: Qualitative research with advanced cervical cancer patients in Brazil, China, Germany, and the US (496)

Abstract

<b>Objectives:</b> Women diagnosed with persistent, recurrent, or metastatic cervical cancer (CC) seek information on their diagnosis, prognosis, & options for treatment. This study aimed to learn what information is valued & how it can best be delivered to these women during their cancer care journey. <b>Methods:</b> Semi-structured telephone interviews were conducted in 2021 among women with advanced CC (diagnosed within two years) in Brazil (BR), China (CH), Germany (GER), & the US. This research elicited voices representing diverse demographic and socioeconomic groups. Interviews focused on assessing rational & emotional drivers, barriers, & overall motivation for information seeking. Transcripts were coded using NVivo qualitative analysis software to identify key themes that emerged from the data within & across countries. <b>Results:</b> We interviewed 98 women (25 in BR, 25 in CH, 20 in GER, & 28 in the US). Overall, women's information seeking on CC was motivated by individualized questions about etiology, best treatment, expected side effects, & prognosis. For women in CH, GER, & US, the main motivation was to understand treatment options, while in BR, it was to understand the prognosis and possibility of a cure. Women seeking information found success stories and information on treatment effectiveness, new treatments, & diet/exercise to be most meaningful. Women were discouraged by failing to find what they sought or finding overwhelming, incomprehensible, conflicting, negative, or unreliable information. Across countries, most women reported some negative feelings around information seeking; the anticipation of negative information led 13 women to avoid information seeking entirely. Some women described a desire to "focus on healing" versus becoming "scared" or "depressed" by information on outcomes, including recurrence, metastasis, and survival rate. The majority of women were assisted by others in their information seeking, primarily family members. In GER, too much confusing/ opposing information was the most common struggle; in CH & BR, difficulty finding specific & reliable information was most common; within the US, too much negative information predominated. <b>Conclusions:</b> This research suggests that resources & messaging for women with CC should be <i>(')</i> easy for women to find; <i>(2)</i> emphasizing success stories; <i>(3)</i> interpretable & credible to patients; <i>(4)</i> engaging to family/friends who provide support in information seeking and treatment decisions; <i>(5)</i> individualized to women's type/stage of CC. In particular, there is an unmet need for straightforward information on survival/prognosis presented in this manner. When women's information needs are met, they can feel empowered, informed, confident, & hopeful despite their cancer diagnosis.