BERKELEY, CA (UroToday.com) - In a UK study, we established that prevalence of erectile dysfunction (ED) after colorectal cancer (CRC) treatment is 75%. We know that ED is a multifactorial condition. Erectile function is dependent on not only physiological and neurohormonal factors but also biopsychosocial context. There are several reasons why ED is not being diagnosed and treated in this patient population. In all healthcare systems, structural issues enable or inhibit patient care. General Practitioners (GPs) generally feel unable to offer specialist advice on many medical matters. There are currently no national guidelines from the National Institute for Health and Clinical Excellence (NICE) on treating ED following CRC. Traditionally men have been less likely than women to access healthcare. Older men can have concerns about the loss of sexual function but often do not seek help because our youth-dominated culture disbelieves in and disapproves of sexual activity in older people. ED is a sensitive issue about which both clinicians and patients are known to lack communication strategies to effectively address.
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We know from the prostate cancer literature that ED can have a dramatic adverse effect on masculinity/self image and a pervasive negative impact on quality of life. For this reason, prostate cancer patients are provided with adequate information prior to surgery and treated after it for ED. No similar process is found in CRC, despite similar rates of ED. Clinicians have generally taken a functional perspective on patient sexuality: ‘does the machinery work?’ Wider psycho-sexual perspectives emphasise that patients vary in the extent to which sexuality is central or peripheral to their self image and social circumstances.
In order to describe the experiences and unmet needs of men who develop erectile dysfunction after CRC treatment, we arranged a semi-structured interviews study with 28 male patients (mean age 59, range 34-80) who had been treated in the West Midlands, UK. We deliberately selected participants with a broad range of socio-demographic characteristics, experiences, and perspectives.
There were many complex reasons why patients with ED did not seek help and therefore remained undiagnosed and untreated for ED. These include hoping that ED would resolve in time (hope), wanting other people to have care for more pressing needs (charity) and believing that clinicians would get around to sorting it out in due course (faith). We found that the most common reason was reticence. This may partly be cultural. Men also do not ask for help because they fear there may be risk associated with refusal – they do not want to jeopardise relations with clinicians in case they require future care for more life-threatening conditions. Some men simply had not ‘got round’ to asking for help. A small number thought that it was pointless or didn’t know who to ask.
Ten men sought treatment (of 24 with ED). Only one described the treatment as successful. One continued to seek a cure. The rest had persisted in seeking medical advice for variable lengths of time and eventually ceased to seek further help. All these men were dissatisfied. They reported PDE5 inhibitors not working, being too expensive, or unsatisfactory (un-spontaneous).
Following CRC treatment, most men reported the serious distress ED had caused them. However, a minority of men were not greatly troubled. More than half suggested that they had not received adequate information prior to surgery. In the worse cases, they also described having been misled, insulted, or cheated.
Clinicians should consider three things carefully. First, making assumptions about likely, appropriate or adequate levels of sexual behaviour or interest will probably give offence to patients. They may not share your views on what someone of their age does - or should consider the ‘right’ amount of sexual activity. We know that many older men may remain interested in sexual activity and retain optimism about the return of any sexual function lost as a result of cancer treatment. Second, this study amplifies previous evidence that PDE5 inhibitors are not a panacea. Many clinicians appear to believe, and to inform patients, that PDE5 inhibitors work well for everyone. The research evidence has never suggested this, but media coverage has perhaps over-stated and over-simplified the effects of these drugs. Third, it was very clear from our research that the majority of men simply do not ask for information or help with ED (and clinicians do not routinely provide this help – for a number of reasons). However, there is an onus on clinicians to raise the subject of ED with patients, because untreated ED has serious negative consequences on the majority of men following CRC treatment. It also has a detrimental effect on relationships between patients and clinicians.
This patient group is very diverse, so there is no universal solution. More coordination of care and consistent strategies to address unmet needs are required. It is likely that greater awareness and better training and support for clinicians could help to address this situation. Services could be reorganised to increase the likelihood of more consistent and coordinated care. Patients could be encouraged to seek the level of support they need from whichever primary or secondary care clinicians they are most comfortable approaching for help.
George Dowswell, BSc, PhD, Research Fellow;1 Tariq Ismail, MB, BCh, MD (Distinc.), FRCS. Consultant Surgeon;2 Sue Clifford, BSc., Trial Manager;1 Sue Wilson, BA, PhD, Professor of Clinical Epidemiology;1 and Sheila Greenfield, BSc, MA, PhD, Senior Lecturer1 as part of Beyond the Abstract on UroToday.com. This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.
- Cancer and Chronic Disease Team, Primary Care Clinical Sciences, University of Birmingham, Edgbaston, Birmingham B15 2TT, UK
- University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital, Birmingham, UK
Disclosure and competing interests
Funding: This paper presents independent research commissioned by the National Institute for Health Research under the research for patient benefit programme (PB-PG-0407-13245). The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research, or the Department of Health.
Competing interests: All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; and no other relationships or activities that could appear to have influenced the submitted work.
Ethical approval: This study was approved by the Warwickshire Research Ethics Committee (08/H1211/122).