title: A longitudinal study on the impact of active surveillance for prostate cancer on anxiety and distress levels.
abstract: OBJECTIVE
  Patients with potentially indolent prostate cancer (PC) can be managed with active surveillance (AS). Our objective was to analyse how anxiety and distress develop in men with untreated PC and whether highly anxious men quit AS.
  
  
  METHODS
  One hundred and fifty Dutch patients who opted for AS in the Prostate cancer Research International: Active Surveillance Study were invited to participate in an additional prospective, longitudinal quality of life (QoL) study within 6 months after diagnosis. Participants completed questionnaires with validated measures on anxiety and distress at inclusion (t = 0), 9 (t = 9) and 18 (t = 18) months after diagnosis. We assessed changes in scores on depression (Center for Epidemiologic Studies Depression (CES-D) scale), generic anxiety (State-Trait Anxiety Inventory (STAI-6)), PC-specific anxiety (Memorial Anxiety Scale for Prostate Cancer (MAX-PC)) and decisional conflict (Decisional Conflict Scale (DCS)) about patients' treatment choice between t = 0, t = 9 and t = 18 using repeated measures analysis.
  
  
  RESULTS
  Response rates for patients still on AS at t = 0, t = 9 and t = 18 assessments were 86%, 90% and 96%, respectively. Nine patients (7%, 9/129) between t = 0 and t = 9 and 33 of 108 patients (31%) between t = 9 and t = 18 stopped AS, mostly (86%) because of protocol-based reasons. CES-D, total MAX-PC and DCS scores did not change significantly (p > 0.05) when comparing t = 18 with t = 9 and t = 0 scores, but generic anxiety (STAI-6; p = 0.033) and fear of disease progression (sub-score of the MAX-PC; p = 0.007) decreased significantly. These differences, however, were clinically modest (0.089 SD and 0.281 SD). Overall, six of 129 men (5%) discontinued AS because of anxiety and distress.
  
  
  CONCLUSIONS
  When men with low-risk PC are managed with AS, fear of disease progression and general anxiety decreased, and only few may discontinue AS because of anxiety and distress. This suggests that negative QoL effects are limited in men with favourable clinical characteristics who opted for AS. (Registered trial number, NTR1718) .
authors.affiliation: Department of Urology, Erasmus Medical Center, Rotterdam, The Netherlands; Department of Public Health, Erasmus Medical Center, Rotterdam, The Netherlands.
authors.forename: Lionne D F
authors.initials: LD
authors.lastname: Venderbos
authors.forename: Roderick C N
authors.initials: RC
authors.lastname: van den Bergh
authors.forename: Monique J
authors.initials: MJ
authors.lastname: Roobol
authors.forename: Fritz H
authors.initials: FH
authors.lastname: Schröder
authors.forename: Marie-Louise
authors.initials: ML
authors.lastname: Essink-Bot
authors.forename: Chris H
authors.initials: CH
authors.lastname: Bangma
authors.forename: Ewout W
authors.initials: EW
authors.lastname: Steyerberg
authors.forename: Ida J
authors.initials: IJ
authors.lastname: Korfage
mesh_terms: D001007:Anxiety / Q000453:epidemiology / Q000209:etiology*; D003657:Decision Making; D003863:Depression / Q000453:epidemiology; D018450:Disease Progression; D005239:Fear; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D011159:Population Surveillance; D011446:Prospective Studies; D011471:Prostatic Neoplasms / Q000150:complications / Q000175:diagnosis* / Q000523:psychology*; D011788:Quality of Life; D018570:Risk Assessment; D013315:Stress, Psychological / Q000453:epidemiology*; D011795:Surveys and Questionnaires; D057832:Watchful Waiting
keywords: active surveillance; adenocarcinoma; cancer; decision-making; oncology; quality of life