DISSATISFACTION WITH INFORMATION PROVISION IS ASSOCIATED WITH WORSE QUALITY OF LIFE AND ILLNESS PERCEPTION AMONG PROSTATE CANCER SURVIVORS: RESULTS FROM THE PROFILES REGISTRY

Purpose:

   After being diagnosed with prostate cancer many patients await the difficult process of comparing and considering treatment options. Information provision plays a crucial role in this decision making process for the treatment of prostate cancer. Physicians provide information in different ways (e.g. conversations, leaflets, information books, websites). However, it remains unclear whether the information patients receive meets the patient information needs. We determined the level of satisfaction with information received by prostate cancer survivors and how this affected quality of life (QoL) and Illness perception.

Method:

   A cross-sectional study was performed among 999 patients, diagnosed with prostate cancer between 2006-2009, as registered in the Eindhoven Cancer Registry. All patients received a questionnaire on health related quality of life (EORTC QLQ-C30 and QLQ-PR25), Brief Illness perception Questionnaire (B-IPQ) and level of satisfaction with information provision (QLQ-INFO25-scale).

Result:

   The response rate was 70% ( N=697). Patients who have undergone radical prostatectomy (N=232) reported the highest level of dissatisfaction with information provision (36%), for brachytherapy (N=124) this was lowest (25%). Dissatisfied patients scored significantly lower (p <.05) on the global health/Qol scale (mean 74 vs. 80), physical – (mean 80 vs. 85), role – (mean 76 vs. 84), emotional - (mean 84 vs. 89) and social functioning scale ( mean 86 vs. 91) compared with satisfied survivors. The level of satisfaction on information received was positively correlated with QoL(B=0.127, 95%CI 0.079-0.176).

Illness perception is assessed by different domains concerning consequences, time line, personal- and treatment control, identity, concern, coherence and emotional representation. Except for the “identity” domain (number of symptoms that the patient sees as part of the illness), dissatisfied patients scored higher on all illness perception domains (p <.05) which reflects a more threatening view of their illness.

Conclusion:

   One in 4 up to 1 in 3 of prostate cancer survivors was not satisfied with the received information, in particular patients who undergone radical prostatectomy. Satisfaction with information provision is positively associated with QoL and better illness perception significantly.  We found that dissatisfaction with information provision among prostate cancer survivors is negatively associated with QoL. These results emphasize the need for patient-tailored information provision in order to achieve better QoL after the treatment of prostate cancer