Shared decision making for ovarian cancer survivors with different levels of health literacy: a qualitative interview study on knowledge and comprehension
Background Patients treated for cancer need to make decisions with their healthcare provider about their care. To participate in the process of shared decision-making (SDM), they need knowledge to understand options and weigh risks, as well as be able to comprehend information. Patients with limited...
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| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Taylor & Francis Group
2025-12-01
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| Series: | Health Literacy and Communication Open |
| Subjects: | |
| Online Access: | https://www.tandfonline.com/doi/10.1080/28355245.2025.2523274 |
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| Summary: | Background Patients treated for cancer need to make decisions with their healthcare provider about their care. To participate in the process of shared decision-making (SDM), they need knowledge to understand options and weigh risks, as well as be able to comprehend information. Patients with limited health literacy (HL) may face lower knowledge and more issues with comprehension than patients with adequate HL. To optimise SDM about follow-up care for patients with ovarian cancer, a better understanding of their knowledge and comprehension is needed.Aims This study investigates the knowledge and comprehension of women with ovarian cancer and varying levels of HL required for SDM about their follow-up care.Methods A two-part qualitative design was used. First, knowledge gaps were identified through the evaluation of prior interview transcripts, leading to the creation of frequently-asked questions (FAQs) and an interview guide. Secondly, semi-structured interviews evaluated patients’ knowledge of ovarian cancer and follow-up care based on the FAQs, and comprehension of the information in a decision aid for ovarian cancer follow-up care.Results Evaluation of 17 prior interview transcripts showed that main knowledge gaps related to detecting recurrences early. Five FAQs were formulated, mostly about physical and additional examinations. Fifteen women with ovarian cancer, including three with limited HL, were included in semi-structured interviews. Many participants believed follow-up consultations improved prognosis and misinterpreted explanations about the limitations of physical examinations. Regarding comprehension, it was observed that participants, regardless of their HL level, faced difficulties interpreting disease-related information. Comprehension was compromised by the presentation of the information and use of medical jargon or concept and value judgement words. Some participants mentioned a preference for visual elements in information materials.Discussion This study revealed significant knowledge gaps and comprehension challenges among women with ovarian cancer. These issues could hinder effective SDM and patient’s readiness for SDM. Future research should focus on interventions to improve HL skills to enhance patients’ capacities for SDM, while also addressing psychological factors such as fear of recurrence. Additionally, studies could investigate the impact of take-home references, such as question-prompt lists, on SDM for ovarian cancer follow-up care. |
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| ISSN: | 2835-5245 |