A new report released on European Prostate Cancer Awareness Day (16 Sep 2015), entitled Prostate Cancer: Living, not Just Surviving, which details findings from a survey of men with prostate cancer, caregivers and healthcare professionals, reveals that UK men living with prostate cancer (n=103) are more likely to worry about quality of life issues – such as intimacy problems with their partner (43 per cent) and the practical impact on their family routine (36 per cent) – than dying (27 per cent).1
The report, developed by Janssen in collaboration with pan-European and national patient associations including the UK’s Prostate Cancer Support Federation (Tackle Prostate Cancer), explores the everyday impact of prostate cancer in ten European countries, and suggests that for UK men who experience chronic physical effects from the disease, fatigue (68 per cent) has the biggest negative impact compared to disability and pain (55 per cent and 27 per cent respectively).1 This was most evident in people with advanced (metastatic) disease (100 per cent) and people on medication such as hormone treatment, chemotherapy and steroids (88 per cent).2
Additionally, 83 per cent of men with the disease feel that intimacy with their partner is the area most restricted by their cancer, over activities such as sports (26 per cent), gentle exercise (22 per cent), travel (22 per cent), or hobbies (19 per cent).1 Over half of the men surveyed (52 per cent) say that their disease has a negative impact on their level of intimacy with their partner.1
The impact of prostate cancer is also as considerable on carers as on men with prostate cancer themselves.Interviews with UK caregivers (n=36) reveal that 62 per cent feel the prostate cancer has a negative impact on their own wellbeing even though 50 per cent of men say that they conceal or downplay physical and emotional problems associated with their disease.1
“Prostate cancer has a huge impact on a man both physically and emotionally, not least because it often limits his life and changes the dynamics of his relationships. Receiving a diagnosis is often extremely shocking but men are living longer now and they must be supported and have their quality of life protected”, commented Hugh Gunn, Trustee of Tackle Prostate Cancer, “We are pleased to have been involved in the development of this survey and report because it can shed further light on what is most important to men living with a difficult disease.”
Additional key findings from the survey found that:
- only 13 per cent of UK healthcare professionals (n=80) feel sufficiently equipped to address patients’ quality of life needs;1
- 67 per cent of men (n=103) claim that their healthcare professional does not advise them on ways to improve their physical and emotional well-being, apart from medication;1 and
- 87 per cent of men (n=103) prefer to receive information about managing their physical and emotional wellbeing in face to face conversations with their healthcare professional rather than from any other source.1
Dr Maria De Santis, Cancer Research Unit, University of Warwick, UK, said, “We know that men struggle emotionally with the impact of the disease just as much as they do physically. However we can also see that it is daily life and relationships that are most profoundly affected, with fears for the future and worries about what will happen ultimately somewhat in the background. It seems that people with prostate cancer would welcome more advice and support on how to manage the impact of prostate cancer. Clearly more needs to be done to ensure that all the professionals that support men with prostate cancer work together to address the quality of life needs of patients.”
Prostate cancer is the most common cancer in men. Over 40,000 men are diagnosed with prostate cancer in the UK each year with a quarter of these cases affecting men aged under 65.3 Over 10,000 men die of prostate cancer each year, making it the second most common cause of cancer deaths in UK men.4 Some men diagnosed with prostate cancer will present with incurable metastatic disease (cancer that has spread beyond the prostate to other areas of the body).
The pan-European survey was carried out in ten countries across Europe by the independent research company, InSites Consulting. The Prostate Cancer: Living, not Just Surviving report can be viewed online here.
About the Prostate Cancer: Living not Just Surviving survey
The Prostate Cancer: Living, not Just Surviving survey was initiated on the recommendation of an independent European patient advocacy group panel, which identified a need to improve support for men with prostate cancer by focusing on their longer-term, holistic (quality of life) needs and those of their caregivers.
A pan-European survey was then carried out amongst 765 men with prostate cancer, 335 caregivers and 400 healthcare professionals to ascertain their views on the physical and emotional impact of prostate cancer. In the UK, 103 men with prostate cancer, 36 caregivers and 80 healthcare professionals were surveyed. The survey was undertaken by the independent research company, InSites Consulting.
Participants were recruited from online research panels and through patient association group partners. Men with prostate cancer and caregivers were sourced from ten countries across Europe, including: the UK, Finland, France, Germany, Italy, Norway, Spain, Sweden, The Netherlands and Belgium. Healthcare professionals were surveyed in the UK, France, Germany, Spain and Italy.
The survey was developed and implemented in partnership with the following expert patient advocacy group panel members:
- Professor Louis Denis – The European Prostate Cancer Coalition (Europa Uomo) (EU)
- David Smith and Hugh Gunn – Prostate Cancer Support Federation (Tackle Prostate Cancer) (UK)
- Ian Banks – European Men’s Health Forum (EMHF) (EU)
- Christian Arnold – Association Nationale des Malades du Cancer de la Prostate (ANAMACAP) (FR)
- Calle Waller – Prostatacancerförbundet (SWE)
About European Prostate Cancer Awareness Day (EPAD)
EPAD 2015 aims to raise awareness, understanding and knowledge of the management of prostate diseases in general and prostate cancer in particular, and to highlight their significant impact on men across Europe and the burden on European social health care.
1 Pan-European Prostate Cancer Patient, HCP and Carer Survey Results. InSites Consulting. October 2014
2 Prostate Cancer Patients and Carers Raw UK Data Tables. InSites Consulting. October 2014
3 Cancer Research UK. Prostate cancer incidence. Available here (accessed September 2015)
4 Cancer Research UK. Prostate cancer mortality statistics. Available here (accessed September 2015)