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The Impact of Limited Cancer Health Literacy on Patient Preference for Shared Care

Background: Patient are increasingly expected to engage in their own care. However, patients with limited health literacy often struggle with this. The expectation of patients' engagement in health care decisions by their healthcare providers likely increases the burden that cancer patients are already experiencing following a life-changing diagnosis. Involving patients with cancer in medical decision-making requires them to have an adequate understanding their disease and treatment options. Limited health literacy poses a barrier to patient engagement in their own care, contributing to health disparities and poorer cancer outcomes. Aim: Our primary objective was to determine levels of health literacy among patients with cancer and the extent of its association with patient preference for care. We also sought to identify sociodemographic and clinical characteristics associated with limited cancer health literacy. Methods: As part of a larger prospective cohort study, N = 345 adult cancer patients attending a large, university-affiliated outpatient oncology clinic were recruited using consecutive sampling. Face to face interviews were conducted using questionnaires. Instruments used included the 30-item Cancer Health Literacy Test (CHLT-30), and the Patient-Practitioner Orientation Scale (PPOS) to determine patient preference for shared care. The relationship between cancer health literacy and patient preference for shared care was examined using bivariate analysis, with logistic regression used to identify predictors. Results: Mean patient age was 60.0 ± 11.6 years. A greater female preponderance was observed (69.4%), with over half of patients indicating secondary school completion (51.6%). Up to 79.3% of patients reported a monthly household income of less than RM 4000 (approximately USD 1000), placing them in the bottom 40% of household incomes in Malaysia. A total of 59.1% of patients (n = 204) in this sample were found to have limited cancer health literacy, with an average score of 14.40 ± 4.04 out of a full score of 30. Patients with limited cancer literacy were 1.69 times (95% CI 1.42-2.03) less likely to prefer active participation in their care. Conclusion: Rates of limited cancer literacy in this sample (59.1%) appear to be at least three times higher than prevailing rates in high resource countries with established cancer control programs such as the United States (18%). One out of every two patients with cancer in this study were found to possess limited health literacy, making this a significant issue particularly given its association with lesser patient preference for shared care. This study marks an important first step toward increasing health literacy among patients with cancer and empowering patients to participate in their care, which may help mitigate the impact of disparities such as lower educational and socioeconomic levels traditionally associated with poorer cancer outcomes.