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A pilot study of population-based, patient-reported outcome collection in cancer survivors

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Abstract

Aim

To determine feasibility and acceptability of completing PROs questionnaires at completion and 1 year after curative cancer treatment.

Methods

Patients assessed in a nurse-led end of treatment survivorship clinic, at a tertiary referral centre, recruited between October 2015 and July 2016 were mailed a survey at baseline and at 12-month follow-up. The survey included validated PRO questionnaires. A target response rate for feasibility, defined as the proportion of the eligible population approached that completed the survey, was set at 70%. Qualitative feedback regarding the survey was collected from participants.

Results

Of the 47 eligible patients approached, 34 (72.4%) agreed to participate with 29 (61.9%) completing the survey at baseline, and 21 (44.7%) at follow-up. Respondents lost to follow-up at 12 months had clinically meaningful lower scores on all QLQ-C30 functioning scales and 8 out of 9 symptom scales/items. Qualitative feedback from survey respondents indicated the content was relevant and acceptable. Participants expressed willingness to complete a similar survey approximately once per year and a higher preference for completing the survey in hard copy compared with online.

Conclusions

Cancer survivors are willing to provide information on a range of PROs, but those with higher needs were the ones less likely to complete surveys. There is scope to improve the response rate and representativeness of the patient cohort captured. Future research should identify strategies to optimise recruitment when collecting PROs data from cancer survivors.

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Data availability

Dataset can be made available from the authors pending appropriate authorisations.

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Acknowledgements

This study was undertaken with the intellectual and logistical support from the Cancer Council SA.

Author information

Author notes

  1. Nadia Corsini

    Present address: Cancer Council South Australia, Greenhill Rd, Eastwood, Australia

  2. Marion C. Eckert, Greg Sharplin, Imogen Ramsey & Kate Gunn

    Present address: University of South Australia, UniSA Clinical and Health Sciences, Rosemary Bryant AO Research Centre, Adelaide, South Australia, 5000, Australia

Authors and Affiliations

  1. Department of Medical Oncology, Flinders Centre for Innovation in Cancer, Flinders University and Flinders Medical Centre Adelaide, Flinders Drive, Bedford Park, South Australia, 5042, Australia

    Veenoo Agarwal, Michael K. Fitzgerald & Bogda Koczwara

  2. Cancer Council South Australia, Greenhill Rd, Eastwood, Australia

    Marion C. Eckert, Greg Sharplin & Imogen Ramsey

  3. University of South Australia, UniSA Clinical and Health Sciences, Rosemary Bryant AO Research Centre, Adelaide, South Australia, 5000, Australia

    Nadia Corsini

  4. South Australian Cancer Service, Central Adelaide Local Health Network, South Australian Health, Adelaide, South Australia, Australia

    Michael K. Fitzgerald & Bogda Koczwara

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  1. Veenoo Agarwal
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Corresponding author

Correspondence to Veenoo Agarwal.

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Conflicts of interest

The authors declare that they have no conflict of interests.

Ethical approval

The study was approved by the Southern Adelaide Clinical Human Research Ethics Committee (HREC/14/SAC/517).

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Informed consent was requested from all eligible patients and obtained from all participants.

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Has been obtained from all the authors.

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Agarwal, V., Corsini, N., Eckert, M.C. et al. A pilot study of population-based, patient-reported outcome collection in cancer survivors. Support Care Cancer 29, 4239–4247 (2021). https://doi.org/10.1007/s00520-020-05910-2

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  • DOI: https://doi.org/10.1007/s00520-020-05910-2

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