Is “Active Surveillance” an Acceptable Alternative?: A Qualitative Study of Couples’ Decision Making about Early-Stage, Localized Prostate Cancer

Abstract

The objective of our study was to describe decision making by men and their partners regarding active surveillance (AS) or treatment for early-stage, localized prostate cancer. Fifteen couples were recruited from a Cancer center multispecialty clinic, which gave full information about all options, including AS. Data were collected via individual, semi-structured telephone interviews. Most patients were white, non-Hispanic, had private insurance, had completed at least some college, and were aged 49–72 years. Ten chose AS. All partners were female, and couples reported strong marital satisfaction and cohesion. All couples described similar sequences of a highly emotional initial reaction and desire to be rid of the cancer, information seeking, and decision making. The choice of AS was built on a nuanced evaluation of the man's condition in which the couple differentiated prostate cancer from other cancers and early stage from later stages, wanted to avoid/delay side effects, and trusted the AS protocol to identify negative changes in time for successful treatment. Treated couples continued to want immediate treatment to remove the cancer. We concluded that having a partner's support for AS may help a man feel more comfortable with choosing and adhering to AS. Using decision aids that address both a man's and his partner's concerns regarding AS may increase its acceptability. Our research shows that some patients want to and do involve their partners in the decision-making process. Ethical issues are related to the tension between desire for partner involvement and the importance of the patient as autonomous decision-maker. The extended period of decision making, particularly for AS, is also an ethical issue that requires additional support for patients and couples in the making of fully informed choices that includes AS.

Factors Influencing Men's Choice of and Adherence to Active Surveillance for Low-risk Prostate Cancer: A Mixed-method Systematic Review

“…Six studies [25, 32, 40–43] suggested that fear of side effects (in particular erectile dysfunction and incontinence) following radical treatment was a strong determinant of AS. Ehdaie [44] found that significantly more men opted for AS (12%) if during treatment counselling they had pro-actively been encouraged not to ignore potential harms of treatment.…”

African American Women’s Involvement in Promoting Informed Decision-Making for Prostate Cancer Screening Among Their Partners/Spouses

“…While there is a sizeable literature on the importance of women’s role in decision-making for prostate cancer treatment ( Chambers, Pinnock, Lepore, Hughes, & O’Connell, 2011 ; Le et al, 2016 ; Manne et al, 2011 ; Rivers et al, 2011 ; Owens, Friedman, & Hebert, 2017 ; Van Bogaert, Hawkins, Pingree, & Jarrard, 2012 ), we found only four studies that explored the potential role for women spouses/partners of African American men in the process of decision-making for prostate cancer screening ( Friedman et al, 2015 ; Hunter et al, 2015 ; Jackson et al, 2015 ; Miller, 2014a ).…”

Exercise training as a novel primary treatment for localised prostate cancer: a multi-site randomised controlled phase II study

“…Nevertheless, living with an untreated cancer can be a source of anxiety for men 3 and active monitoring is associated with a higher rate of disease progression and development of metastatic cancer 1 , 2 . Active surveillance has long been suggested as a primary management strategy for localised prostate cancer, particularly in men thought to be at low risk of progression, however reliably identifying such men is associated with a degree of uncertainly that men and their partners often find difficult to accept 4 , particularly as they perceive no active role in such treatment 5 . Despite the known adverse effects of invasive therapies on quality of life, sexual, urinary and anorectal function 6 , many men opt out of surveillance in favour of what they perceive as an active management strategy involving conventional or investigative ablative therapies.…”