Unmet informational and supportive care needs of patients following cystectomy for bladder cancer based on age, sex, and treatment choices

Nihal E. Mohamed, Sailaja Pisipati, Cheryl T. Lee, Heather H. Goltz, David M. Latini, Francis S. Gilbert, Daniela Wittmann, Cynthia J. Knauer, Reza Mehrazin, John P. Sfakianos, Glen W. McWilliams, Diane Z. Quale, Simon J. Hall

Research output: Contribution to journalArticlepeer-review

47 Scopus citations


Purpose Assessing the unmet needs of cancer patients can help providers tailor health care services to patients’ specific needs. This study examines whether the unmet informational and supportive care needs of the patients with muscle-invasive bladder cancer vary by the patients’ age, sex, or individual treatment choices. Methods and materials Participants (N = 30 survivors; 73.3% men) were recruited from the Mount Sinai Medical Center and through advertisements posted on a national Bladder Cancer Advocacy Network website between December 2011 and September 2012. Data were collected through individual interviews and electronic medical record review. A prior qualitative study of this cohort, using immersion/crystallization approach, confirmed the prevalence of unmet needs across the disease trajectory. This is a secondary quantitative analysis of the initial interview data we collected (i.e., quantitative analyses of transformed qualitative data using Chi-square and Fisher exact tests) to examine differences in unmet needs based on the patient's age, sex, and treatment choices. Results Younger patients (<60 y) were less satisfied with the treatment information received presurgery and more likely to report posttreatment complications, choose a neobladder, and seek and receive professional support regarding sexual function, than were older patients (P<0.05). More women than men reported difficulties with self-care and relied on themselves in disease self-management as opposed to relying on spousal support (P<0.05). Patients with neobladder were more likely to report difficulties with urinary incontinence and deterioration in sexual function, whereas patients with ileal conduit were more likely to require spousal help with self-care. Patients who received chemotherapy were significantly more likely to report changes in everyday life (P<0.05). Lastly, regardless of age, sex, or treatment choice, up to 50% of patients reported feeling depressed before or after treatment. Conclusions Unmet informational and supportive needs of patients with muscle-invasive bladder cancer during survivorship, and vary by age, sex, and treatment choices. Educational and psychological assessments as well as clinical interventions should be tailored to a patient's specific unmet needs, and to specific clinical and demographic characteristics.

Original languageEnglish
Pages (from-to)531.e7-531.e14
JournalUrologic Oncology: Seminars and Original Investigations
Issue number12
StatePublished - 1 Dec 2016


  • Cystectomy
  • Muscle-invasive bladder cancer
  • Unmet need
  • Urinary diversion
  • Urothelial carcinoma of the urinary bladder


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