title: Disease insight and treatment perception of men on active surveillance for early prostate cancer.
abstract: METHODS
  Survey (prospective cohort).
  
  
  METHODS
  1b.
  
  
  OBJECTIVE
  To investigate the levels of knowledge of prostate cancer and the perception of active surveillance (AS) in men on AS, as AS for early prostate cancer instead of radical treatment might partly solve the over-treatment dilemma in this disease, but might be experienced as a complex and contradictory strategy by patients.
  
  
  METHODS
  In all, 150 Dutch men recently diagnosed with early prostate cancer participating in a prospective protocol-based AS programme (PRIAS study) received questionnaires, including a 15-item measure on their general knowledge of prostate cancer, and open-ended questions on the most important disadvantages and advantages of AS, and on the specific perception of AS. We assessed knowledge scores and explored potentially associated factors, the stated (dis)advantages and specific perceptions.
  
  
  RESULTS
  The questionnaire response rate was 86% (129/150). Participants provided correct answers to a median (interquartile range) of 13 (12-14) of 15 (87%) knowledge items. Younger and higher educated men had higher knowledge scores. In line with a priori hypotheses, the most frequently reported advantage and disadvantage of AS were the delay of side-effects and the risk of disease progression, respectively. Specific negative experiences included the feeling of losing control over treatment decisions, distress at follow-up visits, and the desire for a more active participation in disease management. No conceptually wrong understandings or expectations of AS were identified.
  
  
  CONCLUSIONS
  We found adequate knowledge of prostate cancer levels and realistic perceptions of the AS strategy in patients with early prostate cancer and on AS. These findings suggest adequate counselling by the physician or patient self-education.
authors: Department of Urology, Erasmus Medical Center, Rotterdam, The Netherlands. r.vandenbergh@erasmusmc.nl
authors: Roderick C N
authors: RC
authors: van den Bergh
authors: Heidi A
authors: HA
authors: van Vugt
authors: Ida J
authors: IJ
authors: Korfage
authors: Ewout W
authors: EW
authors: Steyerberg
authors: Monique J
authors: MJ
authors: Roobol
authors: Fritz H
authors: FH
authors: Schröder
authors: Marie-Louise
authors: ML
authors: Essink-Bot
mesh_terms: D000328:Adult; D000368:Aged; D004522:Educational Status; D004651:Employment; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D011471:Prostatic Neoplasms / Q000523:psychology* / Q000628:therapy; D012044:Regression Analysis; D012923:Social Class; D011795:Surveys and Questionnaires