Abstract
ObjectiveActive surveillance (AS) represents a fundamental shift in managing select cancer patients that initiates treatment only upon disease progression to avoid overtreatment. Given uncertain outcomes, patient engagement could support decision-making about AS. Little is known about how to optimize patient engagement for AS decision-making. This scoping review aimed to characterize research on patient and provider communication about AS, and associated determinants and outcomes.MethodsMEDLINE, EMBASE, CINAHL, and The Cochrane Library were searched from 2006 to October 2016. English language studies that evaluated cancer patient or provider AS views, experiences or behavioural interventions were eligible. Screening and data extraction were done in duplicate. Summary statistics were used to describe study characteristics and findings.ResultsA total of 2,078 studies were identified, 1,587 were unique, and 1,243 were excluded based on titles/abstracts. Among 344 full-text articles, 73 studies were eligible: 2 ductal carcinoma in situ (DCIS), 4 chronic lymphocytic leukemia (CLL), 6 renal cell carcinoma (RCC) and 61 prostate cancer. The most influential determinant of initiating AS was physician recommendation. Others included higher socioeconomic status, smaller tumor size, comorbid disease, older age, and preference to avoid adverse treatment effects. AS patients desired more information about AS and reassurance about future treatment options, involvement in decision-making and assessment of illness uncertainty and supportive care needs during follow-up. Only three studies of prostate cancer evaluated interventions to improve AS communication or experience.ConclusionsThis study revealed a paucity of research on AS communication for DCIS, RCC and CLL, but generated insight on how to optimize AS discussions in the context of routine care or clinical trials from research on AS for prostate cancer. Further research is needed on AS for patients with DCIS, RCC and CLL, and to evaluate interventions aimed at patients and/or providers to improve AS communication, experience and associated outcomes.
Highlights
Active surveillance (AS) is a relatively new option for managing select cancer patients to reduce over-treatment and the associated sequelae that can impact health and health-related quality of life [1]
This study revealed a paucity of research on AS communication for ductal carcinoma in situ (DCIS), renal cell carcinoma (RCC) and chronic lymphocytic leukemia (CLL), but generated insight on how to optimize AS discussions in the context of routine care or clinical trials from research on AS for prostate cancer
Further research is needed on AS for patients with DCIS, RCC and CLL, and to evaluate interventions aimed at patients and/or providers to improve AS communication, experience and associated outcomes
Summary
Active surveillance (AS) is a relatively new option for managing select cancer patients to reduce over-treatment and the associated sequelae that can impact health and health-related quality of life [1]. Patient engagement (PE) [13] in their own care is relevant in circumstances where there is limited evidence to support decision-making, two or more treatment options are suitable, or treatment outcomes are difficult to predict or may be adverse, as is the case for many types of cancer (20). Such treatment decisions are considered “preference-sensitive” because patients fully informed of the risks and benefits might change their treatment preference [14]. PE improves numerous patient (i.e. experience, satisfaction) and health system outcomes (i.e. cost-effective service delivery and use) [14,15,16], but is more probable if strategies to support it are aimed at patients, and at physicians who influence treatment choices [17]
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