Examining survivors' burden and unmet needs in muscle-invasive bladder cancer: "Beyond the Abstract," by Sailaja Pisipati and Nihal E. Mohamed

BERKELEY, CA (UroToday.com) - Bladder cancer (BC) is the seventh most common malignancy in men and seventeenth in women. According to the SEER database, there were an estimated 72 570 new cases of BC diagnosed in 2013 and an estimated 15 210 deaths. A study by Bosetti, et al. revealed a decreasing trend in the mortality of bladder cancer in both sexes between 1992 and 2006 in most European countries. In the EU, BC mortality was stable until 1992 and then gradually declined thereafter.[1] Similar trends were reported in North America by Edwards, et al. in 2010,[2] possibly reflecting increased standard of care. These were attributable to decreased occupational exposure to carcinogens and reduced incidence of tobacco smoking along with increased standard of care.[3, 4] There are currently 563 640 BC survivors in the United States.

Of the 72 570 new cases of bladder cancer, 25 – 30% are diagnosed with muscle-invasive disease. Radical cystectomy and urinary diversion (i.e., continent and incontinent urinary diversion) are generally employed to treat muscle-invasive bladder cancer and high-risk non-muscle invasive bladder cancer refractory to conservative therapy. Each diversion type has its own group of psychological burdens ranging from negative body image to intrusive nighttime awakenings. There have been no consistent advantages for the varying types of urinary diversions with respect to cancer control and survival rate, and thus selection is largely based on patient-specific characteristics including age, gender, medical comorbidities, surgical issues, treatment-related values, and personal preferences as well as surgeon skill.

It is a well acknowledged fact that the impact of cancer does not end with treatment, and most treatment strategies fail to address the aftermath that involves a complex domain of physical, psychological, social, spiritual, and financial needs that cancer survivors may have after treatment.[5] The concept of unmet patient needs for cancer patients emerged in the mid-to-late 1980s.[6, 7, 8] The supportive care needs of children with cancers and patients with breast cancer were reported.[9, 10, 11, 12] Following the introduction of this concept, there have been reports on unmet needs of patients with prostate cancer, colorectal cancer, and advanced bone cancer.[13, 14, 15, 16]

Current research on cancer survivorship (i.e., definition of survivorship) focuses on examining cancer survivors’ needs and adjustment following treatment. A systematic review of literature to identify gaps in knowledge relating to physical and practical challenges of cancer survivorship identified four main domains which needed to be addressed. These included ongoing key symptoms (pain, fatigue, peripheral neuropathy, lymphedema, gastrointestinal disturbances, sleep disturbances, bladder dysfunction, and menopausal problems), unmet supportive care needs, employment, and inadequate data in the older cancer survivor population.[17] Unmet needs in survivors of breast cancer and colorectal cancer has been well studied.[18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28] A study of 1 152 patients by Armes, et al. in 2009 found that 30% of their patients with breast, gynecological and colorectal cancers reported more than five moderate or severe unmet needs.[29]

There is a dearth of research that examined unmet needs and psychosocial adjustment among BC survivors. In an attempt to investigate unmet needs in bladder cancer survivors, Mohamed and colleagues interviewed 30 patients over a 10-month period following radical cystectomy and urinary diversion.[30] Survivors reported unmet informational and supportive care needs that vary across the disease trajectory (i.e., at time of diagnosis, following surgery, during post-surgical survivorship). At the time of diagnosis, unmet informational and psychosocial needs were predominant and included need of information about treatment options and side effects, recovery process, depression, and worries about changes in body image and sexual function. In the post-operative phase, unmet needs revolved around medical care for complications and supportive care needs for the use of stomal appliances, catheters, and management of incontinence. Emotional distress, worry about the future, poor body image, sexual dysfunction, and difficulty adjusting to changes in daily living were the primary concerns during the survivorship phase, thus emphasizing the need for additional psychological and instrumental support.

It is good medical practice to ensure that patients are provided with adequate information and support that will enable them to make informed decisions, thus facilitating their active participation in their health care management. Structured holistic needs assessment will aid medical and nursing staff, not only to unravel the gaps in the current health care plan, but also to ensure that measures are taken to bridge such gaps for better outcomes. Although The American College of Surgeon Commission on Cancer (CoC) new accreditation standards for hospital cancer programs by 2015 include screening all cancer patients for supportive care needs and emotional distress, compliance of medical institutions with these standards remains low.

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Written by:
Sailaja Pisipati and Nihal E. Mohamed as part of Beyond the Abstract on UroToday.com. This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.

Department of Urology and Oncological Science, Icahn School of Medicine, Mount Sinai, New York, NY USA

Muscle invasive bladder cancer: Examining survivors' burden and unmet needs - Abstract

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