Abstract
ObjectivesActive 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.DesignLongitudinal serial in-depth qualitative interviews every 2–3 years for a median 7 (range 6–14) years following diagnosis.SettingFour centres within the UK Protect trial.ParticipantsPurposive 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).InterventionAM: 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 outcomesThematic analysis of 73 interviews identified strategies to accommodate uncertainty and anxiety of living with untreated cancer; implications for patient care.ResultsMen 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.ConclusionMen 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 numberISRCTN20141297; Pre-results.
Highlights
IntroductionUptake of active surveillance/monitoring (AS/active monitoring (AM)) as a management strategy for low-risk prostate cancer (PCa) has increased markedly in recent years.[1,2,3] Active surveillance (AS)/AM offers the opportunity to delay or avoid significant side effects associated with radical treatments.[4,5,6] Yet protocols for AS/AM vary and the optimum approach to conservative management remains contested, with programmes variably including serum prostate-specific antigen (PSA) testing, digital rectal examination and/or prostate biopsy with or without multiparametric MRI (mpMRI), with the aim of detecting clinical progression for timely curative radical treatment where indicated.[7,8,9]AS/AM protocols require men to live with uncertainty about the consequences of leaving the cancer untreated
If prostate-specific antigen (PSA) rose by 50% or more in a 12-month period or any concerns were raised by the patient or clinician at any time, there could be a re-e valuation of cancer status which could lead to continuing active monitoring (AM) or changing to a radical option
There was a suggestion that higher risk men changed management sooner than those with low-risk disease, but this will be more comprehensively investigated in a future Prostate testing for cancer and Treatment (ProtecT) study paper
Summary
Uptake of active surveillance/monitoring (AS/AM) as a management strategy for low-risk prostate cancer (PCa) has increased markedly in recent years.[1,2,3] AS/AM offers the opportunity to delay or avoid significant side effects associated with radical treatments.[4,5,6] Yet protocols for AS/AM vary and the optimum approach to conservative management remains contested, with programmes variably including serum prostate-specific antigen (PSA) testing, digital rectal examination and/or prostate biopsy with or without multiparametric MRI (mpMRI), with the aim of detecting clinical progression for timely curative radical treatment where indicated.[7,8,9]AS/AM protocols require men to live with uncertainty about the consequences of leaving the cancer untreated. Up to half of men following an AS/AM protocol change to radical treatments within 10 years7–10; 30% of changes occur without indication of clinical progression.[11,12,13] Systematic reviews (SRs) of the literature present a mixed picture regarding psychological well-being of men undergoing AS/ AM14–17; while most men report positive psychological well- being, a minority report short-term heightened anxiety, uncertainty and distress. Cross-sectional studies report men following AS normalise the cancer by ‘screening off’ the diagnosis[19] or reframing its threat[19 20] or actively engage in lifestyle changes to ‘do something extra.’[19 21] there is evidence that anxiety is minimal[22] or decreases with time on AS,[23] longitudinal qualitative research on long-term experiences of AS remains scarce. Longitudinal research enables exploration of sensitive issues as the relationship between interviewer and interviewee develops.[24]
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