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  • Strategies adopted by men to deal with uncertainty and anxiety when following an active surveillance/monitoring protocol for localised prostate cancer and implications for care: a longitudinal qualitative study embedded within the ProtecT trial

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Urology
Original research
Strategies adopted by men to deal with uncertainty and anxiety when following an active surveillance/monitoring protocol for localised prostate cancer and implications for care: a longitudinal qualitative study embedded within the ProtecT trial
  1. Julia Wade1,
  2. Jenny Donovan1,
  3. Athene Lane1,
  4. Michael Davis1,
  5. Eleanor Walsh1,
  6. David Neal2,
  7. Emma Turner1,
  8. Richard Martin1,
  9. Chris Metcalfe1,
  10. Tim Peters1,
  11. Freddie Hamdy2,
  12. Roger Kockelbergh3,
  13. James Catto4,
  14. Alan Paul5,
  15. Peter Holding2,
  16. Derek Rosario6,
  17. Howard Kynaston7,
  18. Edward Rowe8,
  19. Owen Hughes9,
  20. Prasad Bollina10,
  21. David Gillatt11,
  22. Alan Doherty12,
  23. Vincent J Gnanapragasam13,14,
  24. Edgar Paez15
  1. 1Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK
  2. 2Nuffield Department of Surgical Sciences, University of Oxford, Oxford, UK
  3. 3Department of Urology, University Hospitals of Leicester NHS Trust, Leicester, UK
  4. 4Department of Oncology and Metabolism, University of Sheffield Medical School, Sheffield, UK
  5. 5Department of Urology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  6. 6Department of Oncology and Metabolism, University of Sheffield, Sheffield, UK
  7. 7School of Medicine, Cardiff University, Cardiff, UK
  8. 8Department of Urology, North Bristol NHS Trust, Bristol, UK
  9. 9Department of Urology, Cardiff and Vale University Health Board, Cardiff, UK
  10. 10Department of Urology, NHS Lothian, Edinburgh, UK
  11. 11Faculty of Medicine, Health and Human Science, Macquarie University, Sydney, New South Wales, Australia
  12. 12Department of Urology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
  13. 13Department of Surgery, University of Cambridge, Cambridge, UK
  14. 14Department of Urology, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
  15. 15Department of Urology, Newcastle Upon Tyne Hospitals NHS Trust, Newcastle Upon Tyne, UK
  1. Correspondence to Dr Julia Wade; julia.wade{at}bristol.ac.uk

Abstract

Objectives Active surveillance (AS) enables men with low risk, localised prostate cancer (PCa) to avoid radical treatment unless progression occurs; lack of reliable AS protocols to determine progression leaves uncertainties for men and clinicians. This study investigated men’s strategies for coping with the uncertainties of active monitoring (AM, a surveillance strategy within the Prostate testing for cancer and Treatment, ProtecT trial) over the longer term and implications for optimising supportive care.

Design Longitudinal serial in-depth qualitative interviews every 2–3 years for a median 7 (range 6–14) years following diagnosis.

Setting Four centres within the UK Protect trial.

Participants Purposive sample of 20 men with localised PCa: median age at diagnosis 64 years (range 52–68); 15 (75%) had low-risk PCa; 12 randomly allocated to, 8 choosing AM. Eleven men continued with AM throughout the study period (median 7 years). Nine received radical treatment after a median 4 years (range 0.8–13.8 years).

Intervention AM: 3-monthly serum prostate-specific antigen (PSA)-level assessment (year 1), 6–12 monthly thereafter; increase in PSA ≥50% during previous 12 months or patient/clinician concern triggered review.

Main outcomes Thematic analysis of 73 interviews identified strategies to accommodate uncertainty and anxiety of living with untreated cancer; implications for patient care.

Results Men sought clarity, control or reassurance, with contextual factors mediating individual responses. Trust in the clinical team was critical for men in balancing anxiety and facilitating successful management change/continued monitoring. Only men from ProtecT were included; men outside ProtecT may have different experiences.

Conclusion Men looked to clinicians for clarity, control and reassurance. Where provided, men felt comfortable continuing AM or having radical treatments when indicated. Clinicians build patient trust by clearly describing uncertainties, allowing patients control wherever possible and being aware of how context influences individual responses. Insights indicate need for supportive services to build trust and patient engagement over the long term.

Trial registration number ISRCTN20141297; Pre-results.

  • prostate disease
  • qualitative research
  • urological tumours
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/bmjopen-2019-036024

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    Footnotes

    • Contributors JW and JD designed the qualitative research. JW undertook the qualitative analysis and led the drafting of the paper. JD, AL, MD, EW, ET, RM, CM and TP contributed to the interpretation of the data. FH, JD and DN designed the ProtecT RCT and obtained the funding. ProtecT investigators RK, JC, AP, PH, DR, HK, ER, OH, PB, DG, AD, VJG and EP contributed to the acquisition of the data. All authors provided critical comments and approved the final version of the manuscript.

    • Funding This work was supported by the UK National Institute for Health Research (NIHR) Health Technology Assessment (HTA) Programme (projects 96/20/06 and 96/20/99, with the University of Oxford as sponsor (www.nets.nihr.ac.uk/projects/hta/962099). JD, DN and FH are NIHR senior investigators. JD was previously a member of the NIHR Collaboration for Leadership in Applied Health Research and Care West, hosted by University Hospitals Bristol NHS Foundation Trust. FH is supported by the Oxford NIHR Biomedical Research Centre Surgical Innovation and Evaluation Theme and Cancer Research UK Oxford Centre. AL is supported by the Bristol Randomised Trials Collaboration, Bristol Trials Centre, University of Bristol, Bristol, UK. This study was designed and delivered in collaboration with the Bristol Randomised Trials Collaboration (BRTC), a UKCRC registered clinical trials unit which, as part of the Bristol Trials Centre, is in receipt of National Institute for Health Research CTU support funding.

    • Disclaimer The views and opinions expressed in this article are those of the authors and do not necessarily reflect those of the UK Department of Health and Social Care or the sponsor.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Patient consent for publication Not required.

    • Ethics approval Multicentre research ethics approval was granted by the UK East Midlands (formerly Trent) Multicentre Research Ethics Committee (01/4/025).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available on reasonable request. Data (anonymised interview transcripts) are available from JW at julia.wade@bristol.ac.uk on reasonable request and where costs of ensuring data are anonymised are met.