Comparing Perspectives of Canadian Men Diagnosed With Prostate Cancer and Health Care Professionals About Active Surveillance

Abstract

Active surveillance (AS) has gained acceptance as a primary management approach for patients diagnosed with low-risk prostate cancer (PC). In this qualitative study, we compared perspectives between patients and health care professionals (HCP) to identify what may contribute to patient–provider discordance, influence patient decision-making, and interfere with the uptake of AS. We performed a systematic comparison of perspectives about AS reported from focus groups with men eligible for AS (7 groups, N = 52) and HCP (5 groups, N = 48) who engaged in conversations about AS with patient. We used conventional content analysis to scrutinize separately focus group transcripts and reached a consensus on similar or divergent viewpoints between them. Patients and clinicians agreed that AS was appropriate for low grade PC and understood the low-risk nature of the disease. They shared the perspective that disease status was a critical factor to pursue or discontinue AS. However, men expressed a greater emphasis on quality of life in their decisions related to AS. Patients and clinicians differed in their perspectives on the clarity, availability, and volume of information needed and offered; clinicians acknowledged variations between HCP when presenting AS, while patients were often compelled to seek additional information beyond what was provided by physicians and experienced difficulty in finding or interpreting information applicable to their situation. A greater understanding of discordant perspectives about AS between patients and HCP can help improve patient engagement and education, inform development of knowledge-based tools or aids for decision-making, and identify areas that require standardization across the clinical practice.

Supportive care needs of men with prostate cancer: A systematic review update

“…"I got all this information that would cover everybody that ever had prostate cancer, but it was not specific to me." -Participant, 62 years (Lee et al, 2015) Several studies reported unique informational and decision support needs for men on AS (Anderson et al, 2013;Fitch et al, 2017Fitch et al, , 2020Le et al, 2016;Loeb et al, 2018;Mallapareddi et al, 2016;O'Callaghan et al, 2014;Seaman et al, 2019). Men diagnosed with low-risk PCa described the emotional weight of the decision to undergo AS or commence treatment and how the information provided to them by HCPs was rarely empowering enough to make an informed decision.…”

Low‐risk prostate lesions: An evidence review to inform discussion on losing the “cancer” label

“…19,20 While a clinician's recommendation is the most important factor in influencing a patient's decision to undergo active surveillance, 21,22 patients may also be unaware of conservative management options, or have difficulty understanding and weighing up treatment options. [22][23][24][25] The thought of not removing the cancer may also provoke fear of cancer growth and metastasis, which may contribute to decisions to opt out from active surveillance once started. 13 Given these significant patient and clinician barriers, effective strategies are needed to promote acceptance of active surveillance for men with low-risk lesions.…”

“…Clinicians may not recommend active surveillance to patients because of a patient's clinical and personal characteristics (e.g., younger age), and perceptions of: patient disinterest, inadequacy of biopsy sampling, inconsistency in active surveillance guidelines, and inability of some patients to adhere to follow‐up protocols 19,20 . While a clinician's recommendation is the most important factor in influencing a patient's decision to undergo active surveillance, 21,22 patients may also be unaware of conservative management options, or have difficulty understanding and weighing up treatment options 22–25 . The thought of not removing the cancer may also provoke fear of cancer growth and metastasis, which may contribute to decisions to opt out from active surveillance once started 13 …”

Patient and physician perspectives on treatments for low-risk prostate cancer: a qualitative study

“…In addition to quantitative research, a call has been made encouraging qualitative approaches to better understand this issue [ 13 , 14 ]. Existing research highlights the roles of physicians and patients at the time of making treatment decisions, and how their perspectives often differ [ 15 ]. Scherr et al found that treatment decision-making among patients with low-risk PCa was dominated by physicians’ recommendations (mostly based on clinical factors), whereas patients’ preferences were overlooked [ 16 ].…”