The National Cancer Institute (NCI) estimates that in 2011, 69,250 new cases of Bladder Cancer (BC) will be diagnosed and 14,990 patients will die of this disease in the US. Surgery to remove the bladder is the standard therapy when bladder cancer is muscle-invasive (MIBC), which is the case for approximately 30% of newly diagnosed patients. Removal of the bladder necessitates the diversion of urine following three reconstructive techniques;ileal conduit, continent reservoir, and neobladder. Although all types of urinary diversions offer similar recurrence-free survival rates (87% -76% in 5-10-year), the three procedures can have severe effects on patients'urinary, sexual, and gastrointestinal functioning, body-image, and post-treatment quality of life. In spite of recent developments in health communication and QOL research among cancer patients, no study has examined informational, psychological, and health care needs of MIBC patients. This represents an important deficit in the literature given the magnitude and the devastating impact of MIBC treatment on patients QOL. The main objective of this study is to increase the understanding of MIBC patients'unmet needs throughout the illness experience. Identifying these unmet needs is vital in providing necessary support to reduce patients'burden and ultimately to guide the design and evaluation of future psychosocial interventions.
Study aims are:
Aim 1, to explore and identify MIBC patients'unmet needs during the time of diagnosis, treatment, and survivorship through focus groups (N = 40);
and AIM 2, to conduct a web-based survey among patients (N = 150) to assess their unmet needs in different domains across the illness trajectory. Patients will be recruited through the Bladder Cancer Advocacy Network (BCAN). Analyses will explore demographic and clinical predictors of identified unmet needs and associations among unmet needs, QOL, and emotional adjustment. Expected outcomes of this study are: a) a comprehensive description of MIBC patients'unmet needs, and their associations with QOL b) improved understanding of clinical and demographic predictors of unmet needs, and d) an experienced investigator with a well-developed foundation of research in cancer prevention/control. The proposed study is significant and innovative as: a) it is aligned with NCI priorities which emphasize improving care and QOL of life for cancer patients, survivors, and their families;b) it is the first study to systematically assess and quantify unmet needs of MIBC patients across all important domains;c) it explores demographic and clinical predictors of unmet needs which will help the design of future interventions by tailoring information and targeting specific groups of patients;d) need assessments will be informed through the input of patients, survivors, physicians, nurses and an advocacy group (BCAN);e) it is a multi-disciplinary collaborative effort bringing together experts in BC patients'experiences of treatment, decision-making, qualitative research, and quantitative data analysis.
There is a critical information gap to our understanding of how patients with muscle invasive bladder cancer (MIBC) make treatment decisions and the difficulties and challenges they face after treatment. The study proposes to assess MIBC survivors'unmet needs in different domains including informational, psychological, support, and health care needs. Using a mixed methods approach, the proposed research explores the relationships between unmet needs and patients'demographic and clinical characteristics, quality of life, and emotional wellbeing.
| Mohamed, Nihal E; Pisipati, Sailaja; Lee, Cheryl T et al. (2016) Unmet informational and supportive care needs of patients following cystectomy for bladder cancer based on age, sex, and treatment choices. Urol Oncol 34:531.e7-531.e14 |
| Mohamed, Nihal E; Chaoprang Herrera, Phapichaya; Hudson, Shawna et al. (2014) Muscle invasive bladder cancer: examining survivor burden and unmet needs. J Urol 191:48-53 |
