Purpose: This systematic narrative review describes and compares the development and operational approaches of monitoring systems without a clinical care component that collect patient-reported outcome (PRO) data from cancer survivors.
Methods: Searches were conducted using Medline, PubMed, PsycINFO, the Cochrane Library, CINAHL, Scopus, Joanna Briggs Institute EBP Database and Google Scholar (Advanced). Sources of grey literature and websites of relevant organisations were also searched for relevant published and unpublished material. Articles were included if they described the development (including piloting) of monitoring systems with ongoing recruitment that collect PRO at more than one time point, from 6 months post-diagnosis onward.
Results: The initial searches returned 7290 unique citations. After screening titles and abstracts, 39 full-text articles were retrieved for more detailed examination. Eleven articles were included in the review, representing seven international monitoring systems. Systems varied in their scope, implementation process, governance and administration, recruitment and data collection, consent rates, PRO collection, use of PRO and translation strategies.
Conclusions: The most suitable approach for setting-up and implementing a monitoring system for ongoing surveillance will differ depending on the unique requirements, aims and level of resourcing available within a particular context. Better specification and consideration of how PRO data will be used, for what purpose, and by whom, is required to inform effective translational strategies to improve outcomes for cancer survivors.
Implications for cancer survivors: The findings from this review may inform the future development of survivorship monitoring systems in varied environments, which in turn may improve practices that lead to better outcomes for survivors.
Keywords: Cancer survivorship; Oncology; Patient-reported outcomes; Quality of life; Registry; Surveillance.