Despite best efforts, patients are still not entirely satisfied with the information that they receive from their doctors, and research shows that this may affect their quality of life.
This is one conclusion drawn by Ms. Romy Lamers (NL) in her poster on the dissatisfaction with information provision, part of Sunday’s Poster Session 30 which put patient concerns on the frontline.
A cross-sectional study was performed in 2011 among 999 patients, diagnosed with prostate cancer between 2006-2009, as registered in the Eindhoven Cancer Registry (10 hospitals). All patients received a questionnaire on health-related quality of life (HRQoL) (EORTC QLQ-C30 and QLQ-PR25), Brief Illness Perception Questionnaire (B-IPQ) and level of satisfaction with information provision (QLQ-INFO25-scale).
“One in three of all prostate cancer survivors was not satisfied with the information received. Satisfaction with information provision is positively associated with HRQoL and illness perception. These results emphasize the need for better patient information provision, which may favourably impact HRQoL and illness perception among prostate cancer survivors,” said Lamers.
Other posters showed new ways of doctor-patient interaction, be it through Skype (Poster 367), the audio recording of consultations and giving the patient a compact disc for future reference (Poster 368) or online support groups for PCa (Poster 374). Several patients and patient representatives were present in the audience to voice their opinions and discuss with the poster presenters.
Also in attendance was Prof. Bertrand Tombal (BE): “At the bigger sessions about prostate cancer surgery, I think the results that relate to patient QoL might be overstated a bit. At sessions like this, when results come from people who are not in charge of the surgery, the results can be quite different.”
“Also, we must not forget that the diagnosis alone can affect QoL, just as much as the treatment or the cancer itself. As urologists, we might be too much centred on surgery. Monitoring and a patient-centred approach should be a more important cultural aspect of urology. Poster sessions like these highlight this issue in urology at large.”
EAU and Europa UOMO sign updated affiliate partnership
The EAU and Europa UOMO (EUomo), Europe’s largest prostate cancer patient organization have formally renewed their partnership during the congress . The main aim of the continued collaboration is to improve public awareness on prostate diseases in general, and prostate cancer in particular, across Europe.
The new partnership will also optimize the doctor-patient dialogue and collaboration in healthcare development in Europe. EUomo Strategic Consultant, and former Chairman Prof. Louis Denis (BE) said: “Together with the EAU, we are a family. We have to sit down together and work out what the best way is to serve science for the EAU, achieve optimal treatment for the patient, cost-efficiency for society as a whole.”
Benefits for EUomo include access to the latest information on optimal surgical and medical treatment in urology. Active involvement in EAU activities, such as Guidelines, the Annual Congress and Masterclasses is another advantage for the patient organisation. EUomo can also use the EAU’s online platforms to reach a larger public.
“We have to work with organisations like the EAU to educate patients to ask the right questions at the right time. The EAU can certainly help. Patients need the help of urologists to achieve that, through patient-oriented education and guidelines,” said EUomo Chairman Ken Mastris (GB). “With EAU backing, we can extend our presence into Central and Eastern Europe, where patients are perhaps still underrepresented and not as empowered as in Western Europe.”
The collaboration also benefits the EAU by allowing direct and close interaction with an established European patient organisation, enabling it to evaluate patient awareness and attitudes to prevention, diagnosis and the treatment of prostatic diseases.
Together with EUomo, the EAU can establish a broad front with patients’ and nurses’ organisations towards expected government measures. The EAU could also harness EUomo’s affiliates to act as a patient group sounding board for new initiatives.