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. Similar trends were reported in North America by Edwards, et al. in 2010, 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. 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. 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.
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. 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.
- Bosetti C, Bertuccio P, Chatenoud L, Negri E, Vecchia CA, Levi F. Trends in mortality from urologic cancers in Europe, 1970-2008. Eur Urol 2011. 60 (1): 1 - 15.
- Edwards BK, Ward E, Kohler BA, Eheman C, Zauber A, Anderson RN, Jemal A, Schymura MJ, Landsdorp-Vogelaar I, Seeff LC, Ballegooijen MV, Goede SL, Ries LAG. Annual report to the nation on the status of cancer, 1975–2006, featuring colorectal cancer trends and impact of interventions (risk factors, screening, and treatment) to reduce future rates. Cancer 2010; 116: 544 – 573.
- Silverman D, Devesa S, Moore L, Rothman N. Bladder cancer. In: Schottenfeld D, Fraumeni JF, editors. Cancer Epidemiology and Prevention. Oxford University Press: Oxford, UK; 2006. p. 1101–27.
- Ferlay J, Randi G, Bosetti C, Levi F, Negri E, Boyle P, La Vecchia C. Declining mortality from bladder cancer in Europe. BJU Int 2008; 101: 11 – 19.
- Feuerstein, M. Cancer survivorship: research, practice and policy. In: Feuerstein, M.(Ed.), Handbook of Cancer Survivorship. Springer Science + Business Media LLC, New York, 2007: pp. 483 - 494.
- Hinds C. The needs of families who care for patients with cancer at home: are we meeting them? J Adv Nurs. 1985 Nov; 10 (6): 575 – 581.
- Houts PS, Yasko JM, Kahn SB, Schelzel GW, Marconi KM. Cancer 1986 Nov; 58 (10): 2355 – 2361.
- Houts PS, Yasko JM, Harvey HA, Kahn SB, Hartz AJ, Hermann JF, Schelzel GW, Bartholomew MJ. Unmet needs of persons with cancer in Pennsylvania during the period of terminal care. Cancer. 1988 Aug; 62 (3): 627 - 634.
- Bendor SJ. Anxiety and isolation in siblings of pediatric cancer patients: the need for prevention. Soc Work Health Care 1990; 14 (3): 17 - 35.
- Sloper P. Needs and responses of parents following the diagnosis of childhood cancer. Child Care Health Dev. 1996; 22 (3): 187 - 202.
- Girgis A, Boyes A, Sanson-Fisher RW, Burrows S. Perceived needs of women diagnosed with breast cancer: rural versus urban location. Aust N Z J Public Health. 2000; 24 (2): 166 - 173.
- Appleton S, Fry A, Rees G, Rush R, Cull A. Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. Psychooncology. 2000; 9 (6): 511 - 521.
- Jakobsson L, Hallberg IR, Lovén L. Met and unmet nursing care needs in men with prostate cancer. An explorative study. Part II. Eur J Cancer Care (Engl). 1997; 6 (2): 117 - 123.
- Boberg EW, Gustafson DH, Hawkins RP, Offord KP, Koch C, Wen KY, Kreutz K, Salner A. Assessing the unmet information, support and care delivery needs of men with prostate cancer. Patient Educ Couns. 2003; 49 (3): 233 - 242.
- Macvean ML, White VM, Pratt S, Grogan S, Sanson-Fisher R. Reducing the unmet needs of patients with colorectal cancer: a feasibility study of The Pathfinder Volunteer Program. Support Care Cancer. 2007; 15 (3): 293 - 299.
- Hortobagyi GN. Unmet needs in metastatic bone disease and its complications: is progress possible? Semin Oncol. 2001; 28 (2 Suppl 6): 1 – 3.
- Brearley SG, Stamataki Z, Addington-Hall J, Foster C, Hodges L, Jarrett N, Richardson A, Scott I, Sharpe M, Stark D, Siller C, Ziegler L, Amir Z. The physical and practical problems experienced by cancer survivors: A rapid review and synthesis of the literature. European Journal of Oncology Nursing 2011; 204 – 212
- Ruddy KJ, Greaney ML, Sprunck-Harrild K, Meyer ME, Emmons KM, Partridge AH. Young women with breast cancer: A focus group study of unmet needs. J Adolesc Young Adult Oncol. 2013 Dec; 2 (4): 153 – 160.
- Cheng KK, Darshini Devi R, Wong WH, Koh C. Perceived symptoms and the supportive care needs of breast cancer survivors six months to five years post-treatment period. Eur J Oncol Nurs. 2014 Feb; 18 (1): 3 – 9.
- Cardoso F, Bese N, Distelhorst SR, Bevilacqua JL, Ginsburg O, Grunberg SM, Gralla RJ, Steyn A, Pagani O, Partridge AH, Knaul FM, Aapro MS, Andersen BL, Thompson B, Gralow JR, Anderson BO. Supportive care during treatment for breast cancer: resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement. Breast 2013 Oct; 22 (5): 593 - 605.
- McGarry S, Ward C, Garrod R, Marsden J. An exploratory study into the unmet supportive needs of breast cancer patients. Eur J Cancer Care (Engl). 2013 Sep; 22 (5): 673 - 683.
- Bencova V, Krajcovicova I, Bella V, Krcmery V. Psychosocial support needs of Slovak breast cancer survivors one and three years after breast conserving surgery. Bratisl Lek Listy 2013; 114 (2): 96 - 99.
- Doré C, Gallagher F, Saintonge L, Hébert M. Breast cancer screening program: experiences of Canadian women and their unmet needs. Health Care Women Int. 2013; 34 (1): 34 - 49.
- Shun SC, Yeh KH, Liang JT, Huang J, Chen SC, Lin BR, Lee PH, Lai YH. Unmet supportive care needs of patients with colorectal cancer: significant differences by type D personality. Oncol Nurs Forum. 2014 Jan 1; 41 (1): E3 - 11.
- Li WW, Lam WW, Shun SC, Lai YH, Law WL, Poon J, Fielding R. Psychometric assessment of the Chinese version of the Supportive Care Needs Survey short-form (SCNS-SF34-C) among Hong Kong and Taiwanese Chinese Colorectal Cancer patients. PLoS One. 2013 Oct 11; 8 (10): e75755.
- Jefford M, Aranda S, Gough K, Lotfi-Jam K, Butow P, Krishnasamy M, Young J, Phipps-Nelson J, Russell L, King D, Schofield P. Evaluating a nurse-led survivorship care package (SurvivorCare) for bowel cancer survivors: study protocol for a randomized controlled trial. Trials. 2013; 19 (14): 260.
- Li WW, Lam WW, Au AH, Ye M, Law WL, Poon J, Kwong A, Suen D, Tsang J, Girgis A, Fielding R. Interpreting differences in patterns of supportive care needs between patients with breast cancer and patients with colorectal cancer. Psychooncology. 2013 Apr; 22 (4): 792 – 798.
- Cha R, Murray MJ, Thompson J, Wall CR, Hill A, Hulme-Moir M, Merrie A, Findlay MP. Dietary patterns and information needs of colorectal cancer patients post-surgery in Auckland. N Z Med J. 2012 Jun; 125 (1356): 38 - 46.
- Armes PJ, Richardson A, Crowe M, Colbourne L, Morgan H, Oakley C, Palmer N, Ream E, Young A. Patients’ supportive care needs beyond the end of treatment: a prospective and longitudinal survey. Journal of Clinical Oncology 2009; 27: 6172 - 6179.
- Mohamed NE, Chaoprang Herrera P, Hudson S, Revenson TA, Lee CT, Quale DZ, Zarcadoolas C, Hall SJ, Diefenbach MA. Muscle invasive bladder cancer: examining survivor burden and unmet needs. J Urol. 2014 Jan; 191 (1): 48 - 53.
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