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. 2014 Jan;191(1):48-53.
doi: 10.1016/j.juro.2013.07.062. Epub 2013 Jul 30.

Muscle invasive bladder cancer: examining survivor burden and unmet needs

Nihal E Mohamed  1 , Phapichaya Chaoprang Herrera  2 , Shawna Hudson  3 , Tracey A Revenson  4 , Cheryl T Lee  5 , Diane Z Quale  6 , Christina Zarcadoolas  7 , Simon J Hall  2 , Michael A Diefenbach  2
Affiliations

Muscle invasive bladder cancer: examining survivor burden and unmet needs

Nihal E Mohamed et al. J Urol. 2014 Jan.

Abstract

Purpose: 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.

Materials and 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.

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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References

    1. BCAN: Bladder Cancer Basics for the Newly Diagnosed. Borch M, Heffler D, Lee C, et al., editors. Bladder Cancer Advocacy Network. 2008
    1. Hardt J, Filipas D, Hohenfellner R, Egle UT. Quality of life in patients with bladder carcinoma after cystectomy: first results of a prospective study. Quality of Life Research. 2009;9(1):1. - PubMed
    1. Stein JP, Lieskovsky G, Cote R, et al. Radical cystectomy in the treatment of invasive bladder cancer: long-term results in 1,054 patients. J Clin Oncol. 2001;19:666. - PubMed
    1. Krupski T, Theodorescu D. Orthotopic neobladder following cystectomy: indications, management, and outcomes. J Wound Ostomy Continence. 2001;28:37. - PubMed
    1. Studer UE, Danuser H, Hochreiter W, et al. Summary of 10 years' experience with an ileal low-pressure bladder substitute combined with an afferent tubular isoperistaltic segment. World J Urol. 1996;14:29. - PubMed

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