TY - JOUR
T1 - 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
T2 - a longitudinal qualitative study embedded within the ProtecT trial
AU - Wade, Julia
AU - Donovan, Jenny
AU - Lane, Athene
AU - Davis, Michael
AU - Walsh, Eleanor
AU - Neal, David
AU - Turner, Emma
AU - Martin, Richard
AU - Metcalfe, Chris
AU - Peters, Tim
AU - Hamdy, Freddie
AU - Kockelbergh, Roger
AU - Catto, James
AU - Paul, Alan
AU - Holding, Peter
AU - Rosario, Derek
AU - Kynaston, Howard
AU - Rowe, Edward
AU - Hughes, Owen
AU - Bollina, Prasad
AU - Gillatt, David
AU - Doherty, Alan
AU - Gnanapragasam, Vincent J.
AU - Paez, Edgar
N1 - Copyright the Author(s) 2020. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.
PY - 2020/9/9
Y1 - 2020/9/9
N2 - 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.
AB - 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.
KW - prostate disease
KW - qualitative research
KW - urological tumours
UR - http://www.scopus.com/inward/record.url?scp=85090821044&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2019-036024
DO - 10.1136/bmjopen-2019-036024
M3 - Article
C2 - 32907896
AN - SCOPUS:85090821044
SN - 2044-6055
VL - 10
SP - 1
EP - 11
JO - BMJ Open
JF - BMJ Open
IS - 9
M1 - e036024
ER -