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Cancer patients’ and clinicians’ opinions on the best time in secondary care to approach patients for recruitment to longitudinal questionnaire-based research

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Abstract

Purpose

A priority of the UK National Cancer Survivorship Initiative is to increase collection of patient-reported outcome measures (PROMs) longitudinally post-diagnosis. This study aimed to gather cancer patients’ and clinicians’ opinions and preferences about the best time, in the secondary care pathway, to approach patients about joining longitudinal observational PROMs-based (LO-PROMs) research.

Methods

The sample comprised 15 patients with non-metastatic breast, colorectal or prostate cancer, and 15 clinicians including surgeons, oncologists and nurse specialists. Patients and clinicians participated in one face-to-face topic-guided audio-recorded interview. Data were analysed using thematic content analysis.

Results

Patients did not want to be approached about LO-PROMs research early in the care pathway, near diagnosis and treatment planning or before any surgery and its results. Patients felt that LO-PROMs research is best introduced from the time people are ‘settled’ on (post-surgical) treatment regimens, provided they are coping well emotionally and not experiencing significant physical side effects; patients emphasised variability in people’s experience of and response to cancer and treatment. Clinicians also advised against approach near diagnosis, although generally recommended initiating recruitment somewhat sooner than patients.

Conclusions

Patients expressed strong homogeneous preferences and ideally wanted to be approached about LO-PROMs research when their initial fears and anxiety about cancer treatment and survival had diminished, and they felt some sense of certainty and optimism about the future. As the timeline of clinical events varies, maximising recruitment may mean approaching patients at varied time points post-diagnosis. Further recruitment implications are discussed.

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Acknowledgments

We thank the patients and clinicians who gave their time to participate in this study and the Robert Ogden Macmillan Centre for providing interview rooms. This study was funded by Macmillan Cancer Support, with additional financial support from Cancer Research UK, and sponsored by the University of Leeds. We also acknowledge the support of the National Institute for Health Research, through the National Cancer Research Network.

Competing interests

The authors declare that they have no competing interests.

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Authors and Affiliations

  1. Psychosocial Oncology and Clinical Practice Research Group, University of Leeds, St James’s Institute of Oncology, Beckett Street, Leeds, LS9 7TF, UK

    Laura Ashley, Helen Jones, Galina Velikova & Penny Wright

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  1. Laura Ashley
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  2. Helen Jones
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  3. Galina Velikova
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  4. Penny Wright
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Correspondence to Laura Ashley.

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Ashley, L., Jones, H., Velikova, G. et al. Cancer patients’ and clinicians’ opinions on the best time in secondary care to approach patients for recruitment to longitudinal questionnaire-based research. Support Care Cancer 20, 3365–3372 (2012). https://doi.org/10.1007/s00520-012-1518-4

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  • DOI: https://doi.org/10.1007/s00520-012-1518-4

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