How long do patients with chronic disease expect to live? A systematic review of the literature

OBJECTIVE: To systematically identify and summarise the literature on perceived life expectancy among individuals with non-cancer chronic disease. SETTING: Published and grey literature up to and including September 2016 where adults with non-cancer chronic disease were asked to estimate their own life expectancy. PARTICIPANTS: From 6837 screened titles, 9 articles were identified that met prespecified criteria for inclusion. Studies came from the UK, Netherlands and USA. A total of 729 participants were included (heart failure (HF) 573; chronic obstructive pulmonary disease (COPD) 89; end-stage renal failure 62; chronic kidney disease (CKD) 5). No papers reporting on other lung diseases, neurodegenerative disease or cirrhosis were found. PRIMARY AND SECONDARY OUTCOME MEASURES: All measures of self-estimated life expectancy were accepted. Self-estimated life expectancy was compared, where available, with observed survival, physician-estimated life expectancy and model-estimated life expectancy. Meta-analysis was not conducted due to the heterogeneity of the patient groups and study methodologies. RESULTS: Among patients with HF, median self-estimated life expectancy was 40% longer than predicted by a validated model. Outpatients receiving haemodialysis were more optimistic about prognosis than their nephrologists and overestimated their chances of surviving 5 years. Patients with HF and COPD were approximately three times more likely to die in the next year than they predicted. Data available for patients with CKD were of insufficient quality to draw conclusions. CONCLUSIONS: Individuals with chronic disease may have unrealistically optimistic expectations of their prognosis. More research is needed to understand how perceived life expectancy affects behaviour. Meanwhile, clinicians should attempt to identify each patient's prognostic preferences and provide information in a way that they can understand and use to inform their decisions. TRIAL REGISTRATION NUMBER: CRD42015020732