‘It's not like you just had a heart attack’: decision‐making about active surveillance by men with localized prostate cancer

Volk, Robert J.; McFall, Stephanie L.; Cantor, Scott B.; Byrd, Theresa; Le, Yen-Chi L.; Kuban, Deborah A.; Mullen, Patricia Dolan

doi:10.1002/pon.3444

Cited by 47 publications

(61 citation statements)

References 21 publications

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“…Research suggests that AS poses no greater threat to patient mortality or well-being than active treatments [9][10][11][12] when recommended and adhered to correctly. However, there is some concern men on AS experience psychological burdens [13][14][15][16] , which may contribute to AS nonadherence 17 . Emerging research suggests approximately 10% to 20% of men transition from AS to treatment without evidence of disease progression [18][19][20] .…”

Section: Introductionmentioning

confidence: 99%

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

et al. 2019

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Objective Understanding the unmet supportive care needs of men on active surveillance for prostate cancer may enable researchers and health professionals to better support men and prevent discontinuation when there is no evidence of disease progression. This review aimed to identify the specific unmet supportive care needs of men on active surveillance. Methods A systematic review following PRISMA guidelines was conducted. Databases (Pubmed, Embase, PsycINFO, and CINAHL) were searched to identify qualitative and/or quantitative studies that reported unmet needs specific to men on active surveillance. Quality appraisals were conducted before results were narratively synthesised. Results Of the 3613 unique records identified, only eight articles were eligible (five qualitative and three cross‐sectional studies). Unmet Informational, Emotional/Psychological, Social, and “Other” needs were identified. Only three studies had a primary aim of investigating unmet supportive care needs. Small active surveillance samples, use of nonvalidated measures, and minimal reporting of author reflexivity in qualitative studies were the main quality issues identified. Conclusions The unmet needs of men on active surveillance is an underresearched area. Preliminary evidence suggests the information available and provided to men during active surveillance is perceived as inadequate and inconsistent. Men may also be experiencing unmet psychological/emotional, social, and other needs; however, further representative, high‐quality research is required to understand the magnitude of this issue. Reporting results specific to treatment type and utilising relevant theories/models (such as the social ecological model [SEM]) is recommended to ensure factors that may facilitate unmet needs are appropriately considered and reported.

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Section: Introductionmentioning

confidence: 99%

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

et al. 2019

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“…Personal interviews, the main source of messages, were conducted with prostate cancer patients 6–18 months after completing treatment or the decision to follow an AS protocol. Details of the methods and findings from the patient interviews can be found elsewhere (Volk et al, 2013). We began by abstracting quotes from the interviews or drafting quotes based on the literature review or survivor websites.…”

Section: Methodsmentioning

confidence: 99%

Designing Normative Messages About Active Surveillance for Men With Localized Prostate Cancer

Volk

Kinsman

et al. 2015

Journal of Health Communication

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Active surveillance (AS) is increasingly recognized as a reasonable option for men with low-risk, localized prostate cancer, yet few men who might benefit from conservative management receive it. We examined the acceptability of normative messages about AS as a management option for patients with low-risk prostate cancer. Men with a diagnosis of localized prostate cancer who were recruited through prostate cancer support organizations completed a web-based survey (N=331). They rated messages about AS for believability, accuracy, and importance for men to hear when making treatment decisions. The message “you don’t have to panic…you have time to think about your options” was perceived as believable, accurate, and important by over 80% of the survivors. In contrast, messages about trust in the AS protocol and “knowing in plenty of time” if treatment is needed were rated as accurate by only about 36% of respondents. For AS to be viewed as a reasonable alternative, men will need reassurance that following an AS protocol is likely to allow time for curative treatment if the cancer progresses.

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“…Qualitative evidence largely places clinician recommendations and communication as principal drivers for patients' decisions to opt for or against AM/AS. This has tended to be framed in the literature as patients deferring the decision-making process to the clinician, [39][40][41][42] or justifying their decision to opt for AM/AS in light of clinicians' recommendations. 39,41,43 Similar decision-making tendencies are seen in earlier studies of localised PCa management that do not make specific reference to AM/AS.…”

Section: Modelling Prostate-specific Antigen Change With Agementioning

confidence: 99%

Development, validation and evaluation of an instrument for active monitoring of men with clinically localised prostate cancer: systematic review, cohort studies and qualitative study

Simpkin

Rooshenas

Wade

et al. 2015

Health Serv Deliv Res

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BackgroundActive surveillance [(AS), sometimes called active monitoring (AM)],is a National Institute for Health and Care Excellence-recommended management option for men with clinically localised prostate cancer (PCa). It aims to target radical treatment only to those who would benefit most. Little consensus exists nationally or internationally about safe and effective protocols for AM/AS or triggers that indicate if or when men should move to radical treatment.ObjectiveThe aims of this project were to review how prostate-specific antigen (PSA) has been used in AM/AS programmes; to develop and test the validity of a new model for predicting future PSA levels; to develop an instrument, based on PSA, that would be acceptable and effective for men and clinicians to use in clinical practice; and to design a robust study to evaluate the cost-effectiveness of the instrument.MethodsA systematic review was conducted to investigate how PSA is currently used to monitor men in worldwide AM/AS studies. A model for PSA change with age was developed using Prostate testing for cancer and Treatment (ProtecT) data and validated using data from two PSA-era cohorts and two pre-PSA-era cohorts. The model was used to derive 95% PSA reference ranges (PSARRs) across ages. These reference ranges were used to predict the onset of metastases or death from PCa in one of the pre-PSA-era cohorts. PSARRs were incorporated into an active monitoring system (AMS) and demonstrated to 18 clinicians and 20 men with PCa from four NHS trusts. Qualitative interviews investigated patients’ and clinicians’ views about current AM/AS protocols and the acceptability of the AMS within current practice.ResultsThe systematic review found that the most commonly used triggers for clinical review of PCa were PSA doubling time (PSADT) < 3 years or PSA velocity (PSAv) > 1 ng/ml/year. The model for PSA change (developed using ProtecT study data) predicted PSA values in AM/AS cohorts within 2 ng/ml of observed PSA in up to 79% of men. Comparing the three PSA markers, there was no clear optimal approach to alerting men to worsening cancer. The PSARR and PSADT markers improved the modelc-statistic for predicting death from PCa by 0.11 (21%) and 0.13 (25%), respectively, compared with using diagnostic information alone [PSA, age, tumour stage (T-stage)]. Interviews revealed variation in clinical practice regarding eligibility and follow-up protocols. Patients and clinicians perceive current AM/AS practice to be framed by uncertainty, ranging from uncertainty about selection of eligible AM/AS candidates to uncertainty about optimum follow-up protocols and thresholds for clinical review/radical treatment. Patients and clinicians generally responded positively to the AMS. The impact of the AMS on clinicians’ decision-making was limited by a lack of data linking AMS values to long-term outcomes and by current clinical practice, which viewed PSA measures as one of several tools guiding clinical decisions in AM/AS. Patients reported that they would look to clinicians, rather than to a tool, to direct decision-making.LimitationsThe quantitative findings were severely hampered by a lack of clinical outcomes or events (such as metastases). The qualitative findings were limited through reliance on participants’ reports of practices and recollections of events rather than observations of actual interactions.ConclusionsPatients and clinicians found that the instrument provided additional, potentially helpful, information but were uncertain about the current usefulness of the risk model we developed for routine management. Comparison of the model with other monitoring strategies will require clinical outcomes from ongoing AM/AS studies.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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‘It's not like you just had a heart attack’: decision‐making about active surveillance by men with localized prostate cancer

Cited by 47 publications

References 21 publications

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

Designing Normative Messages About Active Surveillance for Men With Localized Prostate Cancer

Development, validation and evaluation of an instrument for active monitoring of men with clinically localised prostate cancer: systematic review, cohort studies and qualitative study

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