Introduction PROs are increasingly used in clinical practice to guide patient-centred care. CRC is a common malignancy in the developed world. Advances in screening, early diagnosis, and effective treatments have led to improved survival rates, and a growing population of long-term CRC survivors with unmet needs. To enable monitoring of key PROs as part of routine survivorship care, we aimed to develop a comprehensive survivorship PRO assessment model for evaluating PROs in CRC.
Methods Four electronic databases searched for: (1) longitudinal studies reporting pre-treatment PRO predictors of survival in CRC identified through univariate or multivariate models, or prevalence of PROs ≥1 year post-treatment completion; and (2) qualitative studies reporting CRC symptoms, treatment side-effects, and HRQOL impacts >1-year post-treatment. Two reviewers independently applied inclusion criteria and extracted: (1) PRO predictors of survival; (2) PRO prevalence rates; and 3) survivors’ long-term impacts. We used meta-synthesis methods to collate and summarise the evidence across studies.
Results Physical and psychological functioning, pain, fatigue and appetite loss had prognostic significance above and beyond clinical predictors of survival in CRC. CRC survivors experience ongoing bowel symptoms and functioning impairments >1-year post-treatment. Patients often self-manage symptoms and functioning impairments (e.g. modify diet, wear nappies). Our PRO model includes six PROs (symptoms, physical, social, psychological and sexual functioning, impact on relationships), three patient-reported experiences (supportive care needs, healthcare experiences, return-to-work), and six mediating factors (disease stage, age, comorbidity, health behaviours, access to supportive care, financial toxicity).
Conclusions CRC survivors experience symptoms that can predict survival and impair functioning. Patients self-manage symptoms, with few supportive care services available targeting symptoms. Post-treatment CRC care should routinely monitor symptoms and functioning. Earlier detection and treatment of these problems may improve HRQOL and even extend survival. Our PRO framework guides the comprehensive assessment of PROs in CRC clinical practice and future trials.