Need for numbers: assessing cancer survivors’ needs for personalized and generic statistical information

Abstract

Background: Statistical information (e.g., on long-term survival or side effects) may be valuable for healthcare providers to share with their patients to facilitate shared decision making on treatment options. In this pre-registered study, we assessed cancer survivors’ need for generic (population-based) versus personalized (tailored towards patient/tumor characteristics) statistical information after their diagnosis. We examined how information coping style, subjective numeracy, and anxiety levels of survivors relate to these needs and identified statistical need profiles. Additionally, we qualitatively explored survivors’ considerations for (not) wanting statistical information. Methods: Cancer survivors’ need for statistics regarding incidence, survival, recurrence, side effects and quality of life were assessed with an online questionnaire. For each of these topics, survivors were asked to think back to their first cancer diagnosis and to indicate their need for generic and personalized statistics on a 4-point scale (‘not at all’- ‘very much’). Associations between information coping style, subjective numeracy, and anxiety with need for generic and personalized statistics were examined with Pearson’s correlations. Statistical need profiles were identified using latent class analysis. Considerations for (not) wanting statistics were analyzed qualitatively. Results: Overall, cancer survivors (n = 174) had a higher need for personalized than for generic statistics (p