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
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...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2020-09-01
|
| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/10/9/e036024.full |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1841554125167263744 |
|---|---|
| author | Chris Metcalfe Jenny Donovan Julia Wade Vincent J Gnanapragasam Michael Davis David Neal Richard Martin Athene Lane Edward Rowe Freddie Hamdy James Catto Emma Turner David Gillatt Eleanor Walsh Derek Rosario Tim Peters Roger Kockelbergh Alan Paul Peter Holding Howard Kynaston Owen Hughes Prasad Bollina Alan Doherty Edgar Paez |
| author_facet | Chris Metcalfe Jenny Donovan Julia Wade Vincent J Gnanapragasam Michael Davis David Neal Richard Martin Athene Lane Edward Rowe Freddie Hamdy James Catto Emma Turner David Gillatt Eleanor Walsh Derek Rosario Tim Peters Roger Kockelbergh Alan Paul Peter Holding Howard Kynaston Owen Hughes Prasad Bollina Alan Doherty Edgar Paez |
| author_sort | Chris Metcalfe |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-d56d53a3d4094c9b913ec2d40c49ae16 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-09-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-d56d53a3d4094c9b913ec2d40c49ae162025-01-08T23:10:10ZengBMJ Publishing GroupBMJ Open2044-60552020-09-0110910.1136/bmjopen-2019-036024Strategies 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 trialChris Metcalfe0Jenny Donovan1Julia Wade2Vincent J Gnanapragasam3Michael Davis4David Neal5Richard Martin6Athene Lane7Edward Rowe8Freddie Hamdy9James Catto10Emma Turner11David Gillatt12Eleanor Walsh13Derek Rosario14Tim Peters15Roger Kockelbergh16Alan Paul17Peter Holding18Howard Kynaston19Owen Hughes20Prasad Bollina21Alan Doherty22Edgar Paez231 Population Health Sciences, Bristol Medical School, Bristol, Bristol, UKPopulation Health Sciences, Bristol Medical School, University of Bristol, Bristol, UKPopulation Health Science, Bristol Medical School, University of Bristol, Bristol, UKDepartment of Surgery, University of Cambridge, Cambridge, UKresearch associate in health services researchNuffield Department of Surgical Sciences, Oxford University, Oxford, UKMRC Integrative Epidemiology Unit, University of Bristol, Bristol, UKPopulation Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK6 Bristol Urology Institute, Department of Urology, North Bristol NHS Trust, Bristol, UKNuffield Department of Surgical Sciences, University of Oxford, Oxford, UK13 Academic Urology Unit, The University of Sheffield, Sheffield, UKPopulation Health Sciences, Bristol Medical School, University of Bristol, Bristol, UKMQ Health, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia1School of Social and Community Medicine, University of Bristol, Bristol, UKDepartment of Oncology and Metabolism, University of Sheffield, Sheffield, UKPopulation Health Sciences, University of Bristol, Bristol, UKDepartment of Urology, University Hospitals of Leicester NHS Trust, Leicester, UKDepartment of Urology, Leeds Teaching Hospitals NHS Trust, Leeds, UKNuffield Department of Surgical Sciences, University of Oxford, Oxford, UKSchool of Medicine, Cardiff University, Cardiff, UKDepartment of Urology, Cardiff and Vale University Health Board, Cardiff, UKDepartment of Urology, NHS Lothian, Edinburgh, UKDepartment of Urology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UKDepartment of Urology, Newcastle Upon Tyne Hospitals NHS Trust, Newcastle Upon Tyne, UKObjectives 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.https://bmjopen.bmj.com/content/10/9/e036024.full |
| spellingShingle | Chris Metcalfe Jenny Donovan Julia Wade Vincent J Gnanapragasam Michael Davis David Neal Richard Martin Athene Lane Edward Rowe Freddie Hamdy James Catto Emma Turner David Gillatt Eleanor Walsh Derek Rosario Tim Peters Roger Kockelbergh Alan Paul Peter Holding Howard Kynaston Owen Hughes Prasad Bollina Alan Doherty Edgar Paez 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 BMJ Open |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| url | https://bmjopen.bmj.com/content/10/9/e036024.full |
| work_keys_str_mv | AT chrismetcalfe strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT jennydonovan strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT juliawade strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT vincentjgnanapragasam strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT michaeldavis strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT davidneal strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT richardmartin strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT athenelane strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT edwardrowe strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT freddiehamdy strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT jamescatto strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT emmaturner strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT davidgillatt strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT eleanorwalsh strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT derekrosario strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT timpeters strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT rogerkockelbergh strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT alanpaul strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT peterholding strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT howardkynaston strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT owenhughes strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT prasadbollina strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT alandoherty strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial AT edgarpaez strategiesadoptedbymentodealwithuncertaintyandanxietywhenfollowinganactivesurveillancemonitoringprotocolforlocalisedprostatecancerandimplicationsforcarealongitudinalqualitativestudyembeddedwithintheprotecttrial |