Introduction: Health literacy describes the ability to access, understand, appraise and use information to make decisions about health. We aimed to understand the health literacy and information needs of breast cancer patients at the time of diagnosis.
Methods: A mixed methods approach was used. 70 consecutive patients with a new diagnosis of breast cancer were asked to complete the Health Literacy Questionnaire (HLQ) and the Cassileth Information Needs Questionnaire. Semi-structured interviews were conducted concurrently until data saturation. Quantitative data was analysed using descriptive statistics and hierarchical cluster analysis. Qualitative data was thematically analysed. The results were triangulated to understand the information needs and health literacy of the population.
Results: 71 HLQ responses were received. 98% of respondents were female, median age 60 (range 39 to 88). 20 women participated in semi-structured interviews, median age 58 (range 39 to 79). Cluster analysis revealed four patient subgroups with distinct profiles of HLQ scores (p=<0.01), independent of education and age (p<0.01). 81% of respondents wanted detailed information relating to their diagnosis and treatment. Interviewed participants wanted accurate information about prognosis and the rationale and benefits of each treatment. Specific information needs differed according to age. Treating doctors were the primary source of information and breast care nurses were valued for their ability to simplify medical information, provide practical advice and reassurance. Overall participants trusted written information but reported it often did not meet their specific needs or the volume provided made it difficult to navigate.
Conclusions: Patients report a strong preference for detailed information about breast cancer and its treatments. The form of this information and its provision may need to vary in response to patient preferences and health literacy. Tailored written information would be a valued adjunct to clinical consultation.