title: Relative importance of sources of symptom-induced distress in urinary bladder cancer survivors.
abstract: OBJECTIVE
  The influence of specific symptoms on emotions and social activities in the individual patient varies. Little is known about this variation in urinary bladder cancer survivors (in other words, about the relative importance of sources of symptom-induced distress).
  
  
  METHODS
  We attempted to enroll 404 surgical patients treated with cystectomy and a conduit or reservoir in four Swedish towns (Stockholm, Orebro, Jönköping, Linköping), 101 surgical patients treated with cystectomy and orthotopic neobladder at the Herlev Hospital in Copenhagen, Denmark, and 71 patients treated with radical radiotherapy for bladder cancer, as well as 581 men and women controls in Stockholm and Copenhagen. An anonymous postal questionnaire was used to collect the information.
  
  
  RESULTS
  A total of 503 out of 576 (87%) treated patients and 422 out of 581 (73%) controls participated but 59 patients were excluded. The primary source of self-assessed distress among cystectomised patients was compromised sexual function; reduced intercourse frequency caused great distress in 19% of the conduit patients, 20% of the reservoir patients and 19% of the bladder substitute patients. The primary source of self-assessed distress in patients treated with radical radiotherapy was symptoms from the bowel; 17% reported great distress due to diarrhoea, 16% due to abdominal pain, 14% due to defecation urgency and 14% due to faecal leakage. The highest proportion of subjects being distressed was 93% (substantial: 43%, moderate: 29% and little: 21%) for treated upper or lower urinary retention (indwelling catheter or nephrostomy).
  
  
  CONCLUSIONS
  The distress caused by a specific symptom varies considerably and the prevalence of symptoms causing great distress differs between treatments in bladder cancer survivors. It is possible that patient care and clinical research can be made more effective by focusing on important sources of symptom-induced distress.
authors.affiliation: Department of Oncology, Radiumhemmet, Z:6, Karolinska Institute, Box 4402, S-102 68, Stockholm, Sweden.
authors.forename: Lars
authors.initials: L
authors.lastname: Henningsohn
authors.forename: Hans
authors.initials: H
authors.lastname: Wijkström
authors.forename: Kenneth
authors.initials: K
authors.lastname: Steven
authors.forename: Jörgen
authors.initials: J
authors.lastname: Pedersen
authors.forename: Christer
authors.initials: C
authors.lastname: Ahlstrand
authors.forename: Gunnar
authors.initials: G
authors.lastname: Aus
authors.forename: Else Brohm
authors.initials: EB
authors.lastname: Kallestrup
authors.forename: Karin
authors.initials: K
authors.lastname: Bergmark
authors.forename: Erik
authors.initials: E
authors.lastname: Onelöv
authors.forename: Gunnar
authors.initials: G
authors.lastname: Steineck
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015653:Cystectomy; D003718:Denmark; D004644:Emotions; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D011183:Postoperative Complications; D011788:Quality of Life / Q000523:psychology; D012647:Self-Assessment; D012735:Sexual Dysfunction, Physiological / Q000209:etiology* / Q000523:psychology; D011795:Surveys and Questionnaires; D017741:Survivors; D013548:Sweden; D001749:Urinary Bladder Neoplasms / Q000532:radiotherapy / Q000601:surgery*; D014547:Urinary Diversion; D016476:Urinary Reservoirs, Continent