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Cancer survivorship monitoring systems for the collection of patient-reported outcomes: a systematic narrative review of international approaches

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Abstract

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 Sources of grey literature and websites of relevant organisations were also searched for relevant published and unpublished material.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.

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Acknowledgements

We gratefully acknowledge the preparatory work carried out by Ms. Amber Halliday that informed the search strategy and methodology for this review.

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Authors and Affiliations

  1. Cancer Council SA, 202 Greenhill Rd, Eastwood, SA, 5063, Australia

    N Corsini, J Fish, I Ramsey, G Sharplin, I Flight, B Wiggins, C Wilson & M Eckert

  2. Flinders University of South Australia, Sturt Rd, Bedford Park, SA, 5042, Australia

    J Fish, I Flight, R Damarell & C Wilson

  3. University of South Australia, North Terrace, Adelaide, SA, 5000, Australia

    D Roder & M Eckert

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  1. N Corsini
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Correspondence to N Corsini.

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Electronic supplementary material

Figure S1

PRISMA flow diagram of study selection (DOCX 26.1 kb)

Table S1

Medline search executed June 15 2015 (DOCX 18 kb)

Table S2

Sources of grey literature (DOCX 19 kb)

Table S3

Monitoring system approaches and implementation (DOCX 39 kb)

Table S4

Validated patient-reported outcome measures used by the monitoring systems (DOCX 24.3 kb)

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Corsini, N., Fish, J., Ramsey, I. et al. Cancer survivorship monitoring systems for the collection of patient-reported outcomes: a systematic narrative review of international approaches. J Cancer Surviv 11, 486–497 (2017). https://doi.org/10.1007/s11764-017-0607-2

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