title: The natural history of symptoms and distress in patients and families following cystectomy for treatment of muscle invasive bladder cancer.
abstract: OBJECTIVE
  We characterized the natural history of symptoms with time in patients with bladder cancer undergoing cystectomy.
  
  
  METHODS
  For 6 months we followed 33 participants treated with muscle invasive bladder cancer treatment with cystectomy in this prospective cohort study. Patients and family caregivers completed validated symptom assessment and satisfaction surveys at baseline, and 2, 4 and 6 months later. Primary outcomes were the change from baseline in pain, fatigue, depression, anxiety, quality of life and spiritual well-being. Secondary outcomes included posttraumatic growth, patient satisfaction and family caregiver burden.
  
  
  RESULTS
  Pain increased after radical cystectomy and remained increased 6 months postoperatively based on Brief Pain Inventory scores (baseline and 6-month scores 4.0, 95% CI 0-8.0 and 9.8, 95% CI 1.9-17.6, respectively, p = 0.03). Posttraumatic growth showed a trend toward an increase at 2 months (p = 0.06). Fatigue peaked at 4 months but did not change significantly with time (p = 0.12). There was similarly no significant change with time in depression, anxiety, quality of life, spiritual well-being or satisfaction. Neither family caregiver burden nor satisfaction showed a statistically significant change with time postoperatively.
  
  
  CONCLUSIONS
  Pain increased after radical cystectomy and remained increased 6 months postoperatively. There was a trend toward increased posttraumatic growth at 2 months. Otherwise, by 6 months cystectomy was associated with no improvement in preoperative symptoms of fatigue, quality of life, spiritual well-being, depression or anxiety. After cystectomy pain should be assessed and treated more aggressively in patients with bladder cancer and efforts should be made to improve postoperative symptoms.
authors.affiliation: Division of General Internal Medicine, University of California-San Francisco, San Francisco, California. Electronic address: carly.benner@ucsf.edu.
authors.forename: Carly
authors.initials: C
authors.lastname: Benner
authors.affiliation: Division of General Internal Medicine, University of California-San Francisco, San Francisco, California.
authors.forename: Molly
authors.initials: M
authors.lastname: Greenberg
authors.affiliation: Department of Nursing, Helen Diller Family Comprehensive Cancer Center, University of California-San Francisco, San Francisco, California.
authors.forename: Nancy
authors.initials: N
authors.lastname: Shepard
authors.affiliation: Department of Urology, University of California-San Francisco, San Francisco, California.
authors.forename: Maxwell V
authors.initials: MV
authors.lastname: Meng
authors.affiliation: Division of General Internal Medicine, University of California-San Francisco, San Francisco, California.
authors.forename: Michael W
authors.initials: MW
authors.lastname: Rabow
mesh_terms: D017028:Caregivers / Q000523:psychology; D015653:Cystectomy; D005192:Family Health; D006801:Humans; D009361:Neoplasm Invasiveness; D010146:Pain / Q000453:epidemiology; D011183:Postoperative Complications / Q000453:epidemiology; D011446:Prospective Studies; D013315:Stress, Psychological / Q000453:epidemiology; D011795:Surveys and Questionnaires; D063189:Symptom Assessment; D001749:Urinary Bladder Neoplasms / Q000473:pathology / Q000523:psychology* / Q000601:surgery*
keywords: cystectomy; pain; quality of life; questionnaires; urinary bladder neoplasms