PURPOSE: Although improvements in perioperative care have decreased surgical morbidity following radical cystectomy for muscle invasive bladder cancer (MIBC), treatment side effects still have a negative impact on patients' quality of life (QOL). This study examines patients' unmet needs along the illness trajectory.
METHODS AND MATERIALS: Thirty patients (26.7% women) treated with cystectomy and urinary diversion for MIBC participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network website between December, 2011 and September, 2012. Data were collected through individual interviews. The interviews were audio-taped and transcribed. Qualitative analyses of transcribed data were used to explore key unmet needs.
RESULTS: At time of diagnosis, unmet informational needs were predominant, consisting of insufficient discussions of these topics: urinary diversion options and their side-effects, self-care, recovery process, and medical insurance. Unmet psychological needs related to depression and worries about changes in body image and sexual function were reported. Post-surgical unmet needs revolved around medical (e.g., pain, bowel dysfunction), and instrumental needs (e.g., need of support with use of stomal appliances, catheters, and incontinence). During survivorship (i.e., from 6 to 72 months following surgery), unmet needs centered around psychological (i.e., depression, poor body image, sexual dysfunction) and instrumental support (e.g., difficulty adjusting to changes in daily-living).
CONCLUSIONS: Meeting patients' needs is imperative to ensure patients' adequate involvement in their healthcare, and to enhance post-surgical QOL. An effective support provision plan should follow changes in patients' needs.
Written by:
Mohamed NE, Chaoprang Herrera P, Hudson S, Revenson TA, Lee CT, Quale DZ, Zarcadoolas C, Hall SJ, Diefenbach MA. Are you the author?
Department of Urology and Oncological Science, Icahn School of Medicine at Mount Sinai, New York, NY.
Reference: J Urol. 2013 Jul 30. pii: S0022-5347(13)05011-8.
doi: 10.1016/j.juro.2013.07.062
PubMed Abstract
PMID: 23911603
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