Results from an international survey of patient perceptions about their prostate cancer treatment were announced yesterday.
According to this survey, which collected data from 624 patients and their partners from seven European nations (France, Germany, Ireland, Italy, Netherlands, Spain, and the UK) as well as the USA through an on-line survey system:
- Healthcare professionals need to consider the impact of prostate cancer on the “whole man” rather than focusing only on treatment of his cancer.
- Patients need better information about the range of treatment regimens available and how these treatments can impact quality of life.
- 34 percent of patients surveyed did not feel sufficiently informed to be able to play a role in their treatment decisions.
- 34 percent of patients surveyed were “dissatisfied” or “not very satisfied” with the level of information available to them in the months following diagnosis.
- 78 percent of the men polled felt that their sex life had been negatively affected by prostate cancer.
- 66 percent of men stated that the emotional impact of prostate cancer was “not discussed” during consultations with their doctors.
- 57 percent of patients felt they were not provided with adequate emotional support following their diagnosis.
- 56 percent of patients and 53 percent of partners would have liked a healthcare professional to spend more time discussing the impact of prostate cancer and its treatment of their sex life.
- 65 percent of partners would have liked more information on how to discuss the potential effects of prostate cancer on their sex life with their husband/partner.
- 90 percent of the patients felt that it would have been useful to have a “buddy” with experience of prostate cancer to whom they could talk and ask questions.
The results from this survey would appear to correlate well with data from other such surveys conducted in the past. The bottom line is that the medical profession still tends to treat localized prostate cancer as an acute clinical problem as opposed to a major, life-changing event with profound long-term consequences for many men and their families.
Gunter Feick, chairman of the German patient association Bundesverband Prostatakrebs Selbsthilfe e. V., is quoted in the media release about this survey as saying, “One of the most important findings … is that there is a clear need for more resources to help support a man emotionally through prostate cancer.” The “New” Prostate Cancer InfoLink would entirely agree with that.
The survey was commissioned by Ferring Pharmaceuticals.
Filed under: Living with Prostate Cancer, Management | Tagged: sex, support, Treatment |
THE "NEW" PROSTATE CANCER INFOLINK 
“The results from this survey would appear to correlate well with data from other such surveys conducted in the past.”
Not sure which surveys these are, or why nothing has been done, but it is pretty obvious from posts on Internet sites that all these conclusions are valid.
There is a degree of criticsm from people who feel that there is little value in the kind of anecdotal evidence that is on my site, but when 90 percent of the patients felt that it would have been useful to have a “buddy” with experience of prostate cancer to whom they could talk and ask questions it seems that the concept of You Are Not Alone Now might not have been too out of line.
Pity that organisations such as the Prostate Cancer Foundation of Australia don’t recognise this value and advertsie the site more.
In 1998 a support group for patients with prostate cancer was initiated. Under the control of an urologist, 192 meetings (one every 3 weeks) took place; 78 patients (66%) attended at least once. This unique local experience has been extremely valuable for patients, who had the chance to meet regularly and share their concerns; they also had a useful opportunity to keep in touch with the doctor in charge, and share doubts and fears concerning their disease.