This survey of supportive care need determined that many men living with prostate cancer have areas of high unmet need. This was particularly evident with regards to psychological care needs. The survey identified high levels of psychological distress within the sample even though the majority (57%) had completed treatment over a year previously. Need for psychological care was particularly high in men not in remission and in those uncertain of their remission status. This might be due to heightened feelings of uncertainty in these men. Recognition of the contribution of uncertainty to psychological distress in men with prostate cancer is not new. It is acknowledged to be particularly associated with watchful wait or active monitoring protocols (Wallace, 2003
; Bailey et al, 2004
) and reported to be present in survivors of the disease (Talcott, 2006
Unfortunately, this study did not explicitly survey the prevalence of either anxiety or depression. Indeed, there is little evidence on how much these psychological symptoms affect men treated for prostate cancer. Some understanding is provided by Korfage et al (2006)
who undertook a 5-year follow-up in Rotterdam of 299 men treated for local disease. They determined that 25% men experienced high anxiety before treatment. This decreased 6 months post-treatment and remained lower throughout the 5-year follow-up period. They concluded that most, but not all, men adjust well psychologically following treatment for localised prostate cancer. The current study suggests that men unsure of their remission status may not adjust as well. This supports the National Audit Office findings (National Audit Office, 2005
) that many men with prostate cancer wish more information on how their disease has responded to treatment.
The current study identified that psychological need typically decreased with time, as did Steginga et al (2004)
. The latter determined that at diagnosis 63% of men had high decision-related distress that persisted for 42% of men 12 months after treatment.
The need for systematic assessment and better management of psychological distress within men with prostate cancer was evident in this study. Regression analysis identified that this variable was a strong predictor of supportive care need. Across all domains measured, men with psychological distress had greater unmet supportive care needs. Nurse-led interventions for uncertainty have been developed and evaluated (Mishel et al, 2002
; Bailey et al, 2004
), as have those for depression (McCorkle et al, 2007
). Arguably, a clinical nurse specialist could deliver such interventions following the requisite training.
Additionally, a high level of unmet sexuality-related need was reported. Younger men, with a good prognosis following curative radical prostatectomy, were more greatly affected. Radical prostatectomy is known to impact on libido and erectile function/sexual performance (Talcott et al, 2003
; Matthew et al, 2005
; Ponholzer et al, 2006
). However, the men in this group are also more likely to be sexually active due to their age, and so find impotency and changes in sexual desire more problematic.
As with uncertainty and psychological distress, problems with sexuality are not necessarily evident; men may be reluctant to bring sexuality-related issues to the fore, given the stigma associated with them. Clinically important sexuality-related need will only be identified through systematic assessment.
This survey also identified that LUTS were almost universal in men up to 2 years following treatment for prostate cancer. Lower urinary tract symptoms transcend stage of disease, treatment administered and stage of treatment. Their high prevalence in this survey (97%) is indicative of the difficulty associated with resolving them. However, prevalence is not dissimilar to that within a general population of elderly men (>65 years) without prostate cancer (Taylor et al, 2006
). Yet, although men in the general population report a similar presence of LUTS, they appear less severe (Taylor et al, 2006
). Fifty per cent of men sampled in this survey of men living with prostate reported these symptoms to be moderate or severe. This would appear unsatisfactory and may reflect current service delivery. Services for incontinence are well established within health care. Specific services for LUTS, however, are less common. The high prevalence and severity of LUTS in this sample would suggest that these symptoms require increased clinical attention within prostate services. They should be addressed from presentation and diagnosis, through treatment and during follow-up.
However, although this is the largest survey of its kind to date to be conducted in the UK and to have enjoyed a relatively healthy response rate, its limitations must be considered. Only men who conveyed interest in the study to the research team were invited to participate. This opt-in approach was stipulated by the approving ethics committee in line with current requirement and illustrates the impact of it on sample selection (Hewison and Haines, 2006
). The sample may be unrepresentative of all men living with this disease. Men from black and mixed ethnic (BME) groups were poorly represented even though two research sites were selected for their high proportion of BME groups in their local populations. The study was also of cross-sectional design and included men at different points in the treatment and recovery pathway. Many men had completed treatment. Further, as baseline measures of supportive care need, symptoms and quality of life prior to treatment were not attained, it is not possible to determine how much the differences in outcome reported between treatment groups relates to baseline factors rather than treatment-related ones. Additionally, the survey relied on self-reported data related to treatment received and remission status. This approach is subject to reporting bias.
However, the study raises important points for debate concerning the current provision of services for men with prostate cancer in England. It strongly indicates that further research is necessary to provide robust evidence on the long-term impact of prostate cancer. From a practice perspective, it suggests that greater attention should be paid to symptoms and problems that men may be reticent to raise with professionals, perhaps due to perceived stigma associated with them. These include sexuality-related problems, psychological distress, incontinence and LUTS, and altered bowel functioning. Management of these problems would be improved through routine systematic screening of men at risk of developing them – this survey and others have determined that particular treatments are strongly associated with particular sequelae. Further, resources need to be devoted to ensuring that all men have access to the relevant specialist services, some of which could be provided by specialist nurses with the requisite training. Finally, this survey has highlighted that psychological distress is currently not being assessed or managed well in men living with prostate cancer in England and this contributes to much of their perceived unmet supportive care need.