title: Muscle invasive bladder cancer: examining survivor burden and unmet needs.
abstract: OBJECTIVE
  Although improvements in perioperative care have decreased surgical morbidity after radical cystectomy for muscle invasive bladder cancer, treatment side effects still have a negative impact on patient quality of life. We examined unmet patient needs along the illness trajectory.
  
  
  METHODS
  A total of 30 patients (26.7% women) treated with cystectomy and urinary diversion for muscle invasive bladder cancer participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network (BCAN) website between December 2011 and September 2012. Data were collected at individual interviews, which were audiotaped and transcribed. Transcribed data were quantitatively analyzed to explore key unmet needs.
  
  
  RESULTS
  At diagnosis unmet informational needs were predominant, consisting of insufficient discussion of certain topics, including urinary diversion options and their side effects, self-care, the recovery process and medical insurance. Unmet psychological needs related to depression, and worries about changes in body image and sexual function were reported. Postoperative unmet needs revolved around medical needs (eg pain and bowel dysfunction) and instrumental needs (eg need of support for stomal appliances, catheters and incontinence). During survivorship (ie 6 to 72 months postoperatively) unmet needs centered around psychological support (ie depression, poor body image and sexual dysfunction) and instrumental support (eg difficulty adjusting to changes in daily living).
  
  
  CONCLUSIONS
  Meeting patient needs is imperative to ensure adequate patient involvement in health care and enhance postoperative quality of life. An effective support provision plan should follow changes in patient needs.
authors.affiliation: Department of Urology and Oncological Science, Icahn School of Medicine at Mount Sinai, New York, New York. Electronic address: nihal.mohamed@mountsinai.org.
authors.forename: Nihal E
authors.initials: NE
authors.lastname: Mohamed
authors.affiliation: Department of Urology and Oncological Science, Icahn School of Medicine at Mount Sinai, New York, New York.
authors.forename: Phapichaya
authors.initials: P
authors.lastname: Chaoprang Herrera
authors.affiliation: Department of Family Medicine and Community Health, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey.
authors.forename: Shawna
authors.initials: S
authors.lastname: Hudson
authors.affiliation: Doctoral Program in Psychology, Graduate Center of City University of New York, New York, New York.
authors.forename: Tracey A
authors.initials: TA
authors.lastname: Revenson
authors.affiliation: Department of Urology, University of Michigan, Ann Arbor, Michigan.
authors.forename: Cheryl T
authors.initials: CT
authors.lastname: Lee
authors.affiliation: Bladder Cancer Advocacy Network, Bethesda, Maryland.
authors.forename: Diane Z
authors.initials: DZ
authors.lastname: Quale
authors.affiliation: City University of New York School of Public Health at Hunter College, New York, New York.
authors.forename: Christina
authors.initials: C
authors.lastname: Zarcadoolas
authors.affiliation: Department of Urology and Oncological Science, Icahn School of Medicine at Mount Sinai, New York, New York.
authors.forename: Simon J
authors.initials: SJ
authors.lastname: Hall
authors.affiliation: Department of Urology and Oncological Science, Icahn School of Medicine at Mount Sinai, New York, New York.
authors.forename: Michael A
authors.initials: MA
authors.lastname: Diefenbach
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017281:Cost of Illness; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D010346:Patient Care Management; D011788:Quality of Life; D012648:Self Care; D001749:Urinary Bladder Neoplasms / Q000523:psychology / Q000628:therapy*
keywords: BC; ISMMS; ITM; Icahn School of Medicine at Mount Sinai; MIBC; QOL; bladder cancer; health services needs and demands; illness trajectory model; muscle invasive bladder cancer; neoplasm invasiveness; quality of life; survivors; urinary bladder neoplasms
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