What information do patients want across their cancer journeys? A network analysis of cancer patients' information needs

Background Patients want information across their cancer journeys. We investigated what sort of information they want and at what stage in the cancer journey by examining English patients' satisfaction derived from ratings of their care. Methods Using patient experience data from 209 Clinical Commission Groups (CCGs) involving 72 788 respondents in 2016, overall patient satisfaction ratings and information needs questions were extracted. Novel network analysis techniques were used to construct an undirected weighted concentration network to assess the relationship between information needs and patient satisfaction. Results From the network analysis, we found that patients value information early in the pathway; there were higher associations between patient satisfaction and when information needs are met in earlier phases of the cancer journey. Across the stages of the cancer journey, strong associations between information needs and patient satisfaction emerged during diagnostic testing and also at those points when patients received information provided by the clinical nurse specialists. A mixture of strong and weak associations between patient satisfaction and information needs was found during later phases of the cancer journey, specifically when patients move from treatment to home care. Our study identified that meeting needs for information related to supportive care may be a weaker factor in patient satisfaction than meeting needs for information related to the patient's disease, its treatment and the side effects of treatment. Conclusion If patients have their information needs met, especially during stages within the cancer journey when information needs are highest, they are more likely to be satisfied with their care. Our study has implications for information giving and improving patient satisfaction in cancer care.