Table 2 Data gathering activities and relevance to PROACTIVE planning

Review of the literature:

Systematic review and meta-analysis of depression and anxiety in prostate cancer

(Full study published elsewhere [4])

An evidence-based approach activity to systematically review literature around depression and anxiety prevalence in patients with prostate cancer

Due to a lack of previous research about depression and anxiety in men specifically on the AS pathway, this review included men on other PCa treatment pathways. After de-duplication, 1130 articles were screened for eligibility, and 27 full journal articles were included giving a total sample size of 4494 prostate cancer patients

Anxiety and depression were highly prevalent, and levels varied throughout the course of the illness and according to treatment status. A pattern of depression and anxiety was identified showing rates were highest after diagnosis before treatment (depression: 17.27% (95% CI 15.06 to 19.72%), anxiety: 27.04% (95% CI 24.26 to 30.01%)), lowered during treatment (depression: 14.70% (95% CI 11.92 to 17.99%), anxiety: 15.09% (95% CI 12.15 to 18.60%)), and then raised again when treatment was complete (depression: 18.44% (95% CI 15.18 to 22.22%), anxiety: 18.49% (95% CI 13.81 to 24.31%))

Of the 27 articles included, only 4 involved AS patients [19,20,21,22]. The upper depression and anxiety prevalence rates reported within these articles were high, 17% and 21% respectively, indicating the need for further research into the psychological impact of AS, and an investigation into the use of a support tool

Cross-sectional survey study:

Cross-sectional assessment of depression and anxiety prevalence in prostate cancer patients undergoing active surveillance

(Full study published elsewhere [5])

To further explore the issue of heightened anxiety and depression in men with PCa, and provide a broader picture specific to AS

313 men being managed by AS for PCa across 7 UK urology centres were recruited. The primary outcome was the Hospital Anxiety and Depression Scale (HADS) [23]. The survey collected demographic data (age, employment, relationship, ethnic and educational status), to allow for cross-tabulation with anxiety and depression scores. Ethical approval was granted by the Berkshire Research Ethics Committee, reference 11/SC/0071

Results from this survey indicated a clinical depression prevalence of 12.5%, and clinical anxiety prevalence of 23% measured by the HADS. The results show a more than doubled depression prevalence, and almost tripled anxiety prevalence in men on AS for prostate cancer compared to men of a similar age in the general population (6% and 8% respectively [24]). Divorce was the only demographic predictor of higher anxiety and depression [5], indicating the family environment may need further investigation also

With the combined results from the systematic review and cross-sectional assessment indicating elevated levels of anxiety and depression, the research team concluded the levels of distress in men on AS for PCa needs to be addressed

Review of existing interventions in the field:

A narrative literature review of supportive psychological interventions within prostate cancer

(Full study published elsewhere [8])

To gain an insight into whether informational, psychological, emotional, or cognitive interventions can positively impact men with prostate cancer

Ideally this review would have focussed on AS patients, however, due to a paucity of interventions in this area, interventions for PCa not exclusive to AS were included. The interventions were categorised by delivery mode: delivered in a group-based environment, delivered over the phone, delivered over the internet, or delivered by other means. Intervention components and intervention effectiveness were considered in tandem (listed in Table 3) to enhance understanding of the components that may be effective in a new intervention

See Table 3 for a summary of the self-care interventions

See Table 3 for the implications for PROACTIVE

Qualitative study with a sample of the target audience:

“They say most men die with and not from prostate cancer, but how do you live with it?” A qualitative interview study of the supportive care needs of patients on active surveillance

(Full study published elsewhere [8])

The research team carried out a qualitative study with the aim of gaining a more in-depth and specific understanding of the supportive care requirements of prostate cancer patients being managed with AS

20 men on active surveillance were recruited from the prostate cancer clinic at Southampton General Hospital. Semi-structured qualitative interviews were conducted and analysed inductively using thematic analysis. Ethical approval was obtained from Oxfordshire Research Ethics Committee, reference 11/SC/0355)

Table 4 shows the key findings that emerged from the data. In summary, the men reported high levels of emotional distress, a lack of knowledge about their condition or how to self-manage it, and a desire for more information and support [8]

The results from this qualitative study indicate that men being managed with active surveillance would welcome specific additional psycho-educational support to help them better cope and manage with the burden of living with untreated prostate cancer. According to the data, a mixture of web-based support and group session support would be most appropriate