Utilization of patient-reported outcome measures for women with low health literacy in gynecologic oncology – A mixed-methods study

PURPOSE: Patient-reported outcome measures (PROMs) are used in oncology to assess patients' wellbeing. It is unclear if PROMs suit patients with low health literacy (HL). This study aimed to determine the prevalence of low HL in gynaecological cancer patients, describe associated clinical and sociodemographic factors, and explore PROMs use and comprehensibility for this group. METHODS: Patients treated for a gynaecological malignancy completed a waiting room questionnaire to assess self-perceived HL. Clinical and sociodemographic characteristics were collected via additional questions and the electronic patient file. Those with low HL, identified by the self-perceived HL screener and educational level, were interviewed, covering cognitive debriefings of a PROM-subset and semi-structured questions on attitudes toward PROMs. Patient characteristics were analyzed descriptively. Qualitative interview data were analyzed using Tourangeau's response process model and reflexive thematic analysis. RESULTS: In total, 136 patients completed the waiting room questionnaire. 23.5% (n = 32/136) had self-perceived low HL, of which 18 agreed to interviews. Cognitive debriefings revealed comprehensibility issues, particularly related to interpreting recall periods and response options. Some terms were perceived as ambiguous or emotionally charged. During semi-structured questions, participants expressed digital access issues and reluctance toward PROMs, often due to confusion about their purpose and absence of feedback on prior responses during consultations. DISCUSSION: Challenges with PROM comprehensibility and use among patients with low HL may hinder accurate health status reflection, impacting clinical work and research outcomes. Improvements are needed in clearly communicating PROMs' purpose and feedback on responses. To overcome comprehensibility barriers, PROMs should be developed and validated with low HL populations.