Is variation in patients' experiences of cancer care associated with their subsequent survival

Abstract

Abstract Background Colorectal, lung, breast, and prostate cancers are the most common cancers in England. Cancer prognosis and cancer survival are widely used performance measures of cancer care. Patient experience is a key aspect of healthcare quality and widely considered as the third pillar of healthcare quality alongside patient safety and clinical effectiveness. Improving cancer patients’ experiences and their subsequent survival were emphasised in the recent cancer care strategies in England. Previous research has identified sociodemographic variation in cancer patients’ experiences in England. An important but as yet unanswered question is whether the variation seen in cancer patients’ experiences is also associated with their subsequent survival. Aims: This PhD thesis consists of five projects: Project 1: A systematic review to examine how patients’ experiences have been linked to survival. Project 2: A population-based case control study to assess the representativeness of Cancer Patient Experience Survey (CPES) responders. Project 3: A cross sectional study to assess how Clinical Nurse Specialists (CNS) influence patients’ experiences with cancer care. Project 4: A systematic review to assess what factors influence cancer patients’ experiences. Project 5: A population-based cohort study to assess the association between patients’ experiences with CNS care and their subsequent survival. Methods: I used a mixture of different analyses to carry out the five projects in this thesis. Two systematic reviews were carried out for projects 1 and 5. The rest of the thesis analyses focused on colorectal, lung, breast and prostate cancer patients responding to CPES during 2010–2014 using the linked NCRAS-CPES at Public Health England. I assessed the representativeness of CPES using a population-based case-control design and assessed the role of CNS in cancer care using a population-based cross-sectional study. In the final project, I conducted a population-based cohort study to assess the association between cancer patients’ experiences with CNS and their subsequent survival. Results: Project 1: systematic review This review included 16 studies and showed that satisfaction with care and psychosocial support were the aspects of experience associated with survival. Positive, negative or no association between experience and survival were reported across the studies included in the review. Project 2: representativeness of CPES responders Compared with controls, CPES responders across all cancers were found to be younger, more likely to have a White ethnic background, to be resident in less deprived areas and diagnosed with earlier stage disease. Median survival for responders was also higher for the CPES responders than the general cancer population across all cancers. Project 3: role of CNS in patients’ experiences Across all cancer types, patients who reported being given the name of a CNS reported better experiences across several aspects of care. Experiences of being involved in treatment decisions was most strongly associated with reporting being given a CNS name across all cancers. Project 4: factors influencing patients’ experiences This review included 38 studies from several countries and showed that there are several factors affecting cancer patients’ experiences at patient, disease, and healthcare system levels. Cancer type, prognosis, and patients’ demographic characteristics were consistently linked with variation in patients’ experiences across many countries. Project 5: patients’ experiences with CNS and their subsequent survival Overall, there was variation in cancer patients’ survival in relation to their reported communication experiences with CNS. Among the three compared groups (excellent experience, non-excellent experience, and no CNS name given), patients who reported not bei