The Role of Health Literacy in Perceived Information Provision, Satisfaction, and Health-related Quality of Life Among Rare and Common Cancer Patients: A Population-based Registry Study

Health literacy (HL) has been found to affect perceived information provision (PIP), satisfaction with information provision, and health-related quality of life (HRQoL) in patients with cancer. Patients with a rare cancer are confronted with challenges, such as a lack of information. The aim of this study was to explore the impact of HL on PIP, satisfaction with information provision, and on HRQoL in rare compared to common cancer patients.A population-based study was conducted using the PROFILES registry. Patients with rare (n = 385) and common (n = 1,692) cancer were included. Within group associations (low/medium HL, high HL, rare cancer, common cancer) were assessed. Regression analyses were used to assess associations between HL, PIP, satisfaction, and HRQoL, taking cancer group into account.Within the low/medium HL group, no statistically significant differences were found between rare and common cancer patients. Yet, within the high HL group, rare cancer patients scored significantly lower on all PIP-categories (except PIP-medical tests), satisfaction and HRQoL. Within the rare cancer group, patients with low/medium HL scored lower, compared to those with high HL, on PIP-medical tests and PIP-treatment, while within the common cancer group, patients with low/medium HL scored lower on all PIP-categories, satisfaction and HRQoL (all: p<0.05).Information needs might vary between patients with a different HL level and/or cancer group. Healthcare professionals should take individual needs into account, with a special focus on patients with a rare cancer and low/medium HL, in order to convey information in an understandable, patient-tailored way.