The impact of close interpersonal relationships on men with localised prostate cancer on active surveillance

Abstract

Men with localised, slow growing prostate cancer (PCa) are increasingly being offered active surveillance (AS). AS involves closely monitoring the cancer with a view to delaying or avoiding active treatment and the associated side effects. Living with an untreated cancer can have a negative psychological impact on both the patient and their significant other (SO). Previous research suggests partners/SOs of men on AS are important in the men’s experiences, acceptance and adherence to AS, and also have a big influence on treatment decision-making. Research encompassing both men on AS and their significant others is limited. This thesis explores patient and SO experiences of undergoing AS for PCa, the way in which dyads perceive each other’s AS related feelings and reactions, and how these feelings and reactions impact each other.

A qualitative synthesis explored the evidence base for experiences of men on AS and their SOs. The synthesis of 28 studies revealed a large variation in perceptions of disease severity in men on AS ranging from perceptions that the cancer is ‘insignificant’, to something ‘worse than a heart attack or stroke’. Similarly, levels of anxiety and uncertainty varied across the sample. The greatest expressed concern was missing the window of opportunity to treat. SOs were reported to be heavily involved throughout diagnosis, treatment decisions and subsequent lifestyle changes, and also reported feelings of anxiety and uncertainty.

A quantitative survey study was conducted with men on AS and their SOs. Participants (n=43) were recruited through charity advertising (Prostate Cancer UK (PCUK), Prostate Cancer Support Organisation (PCaSO) and Tackle Prostate Cancer). Recruitment was harder than anticipated and the small sample size resulted in an underpowered study from which limited conclusions could be drawn. Correlational analysis and paired samples t-tests were conducted and results interpreted with caution. The findings suggest that these men on AS and their SOs were not experiencing significant anxiety or depression, however, SOs appear more anxious than their male counterparts.

A qualitative interview study with 9 men on AS for PCa and their SOs (n=18) indicated the dyads function as an interconnected, interdependent unit with interlinked emotional responses, often triggering each other. Both members of the dyad experience PCa related distress, and both men on AS and SOs describe two-directional support. Differing feelings about AS and the decision not to pursue active treatment were common within couples, with the men prioritising the avoidance of active treatment side effects, and SOs keen to minimise the chance of disease progression, feeling less concerned about potential treatment side effects. More emotional support is needed for this population.

In conclusion, some find the AS pathway distressing, and AS specific support is needed for men and their SOs. SOs of those on AS often view themselves as also on AS, and suffer the same, if not more, distress. Responses and reactions to the PCa diagnosis and AS pathway of the men with PCa and their SOs are intricately linked, and this needs more recognition in clinical practice.

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Identifiers

ORCID for Stephanie Hughes: orcid.org/0000-0003-4801-8245

ORCID for Hazel Everitt: orcid.org/0000-0001-7362-8403

ORCID for Becky Band: orcid.org/0000-0001-5403-1708

ORCID for Beth Stuart: orcid.org/0000-0001-5432-7437

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