Patient-reported outcomes and health-related quality of life in individuals living with, through, and beyond cancer in Sweden: a cross-sectional study

BACKGROUND: The use of patient-reported outcome measures (PROM) can be beneficial in several ways. However, presentations of PROM data from individuals living with, through, or beyond cancer are scarce in the existing scientific literature, and challenges in presenting and interpreting PROM data may be an explanation. Our overall aim was to describe aspects of wellbeing in individuals living with current or previous cancer, 1-2 and 5-6 years after diagnosis. We also aimed to identify vulnerable subgroups of individuals and to facilitate the interpretation of PROM data by combining different presentation forms. METHODOLOGY: Adults in the Southern healthcare region in Sweden with invasive breast, prostate, lung, or colorectal cancer diagnosed 1-2 or 5-6 years ago were invited to a survey using the European Organisation for Research and Treatment of Cancer (EORTC) instrument QLQ-C30 (C30). We analyzed subgroups of respondents using scale scores, clinically anchored problem ranges, and Quality-Adjusted Life Years weights. Moreover, we compared our C30 scores to Swedish general population reference values, EORTC diagnose-specific reference values, and other similar cancer studies. RESULTS: A total of 2,131 individuals responded (26% response rate). The results demonstrate consistent differences in C30 scale scores, where respondents with several comorbidities, younger age, and lung and colorectal cancer diagnoses had poorer scores. Respondents within problem ranges were consistent with the results on scale scores. Quality-Adjusted Life Years weights displayed a generally similar pattern. Our respondents showed no differences on C30 scales compared to the Swedish general population and recent similar studies. There were some differences compared to diagnose-specific reference values and some older similar studies. CONCLUSIONS: Aspects of wellbeing varied between subgroups, suggesting potential to develop care for certain patient groups with poorer scores, i.e. the younger age groups and in those with several comorbidities, and individuals diagnosed with lung cancer and colorectal cancer. However, individuals who lived 1-2 or 5-6 years after cancer diagnosis experienced no difference in wellbeing than published results from the Swedish general population. Our different ways of presenting PROM show similar results overall but serve to elucidate different aspects which may contribute to the practice of presenting and interpreting PROM data.