Date Published: August 10, 2012
Publisher: Hindawi Publishing Corporation
Author(s): N. E. Mohamed, M. A. Diefenbach, H. H. Goltz, C. T. Lee, D. Latini, M. Kowalkowski, C. Philips, W. Hassan, S. J. Hall.
Bladder cancer is the fifth most commonly diagnosed cancer and the most expensive adult cancer in average healthcare costs incurred per patient in the USA. However, little is known about factors influencing patients’ treatment decisions, quality of life, and responses to treatment impairments. The main focus of this paper is to better understand the impact of muscle invasive bladder cancer on patient quality of life and its added implications for primary caregivers and healthcare providers. In this paper, we discuss treatment options, side effects, and challenges that patients and family caregivers face in different phases along the disease trajectory and further identify crucial areas of needed research.
Cancer diagnosis is often perceived as a traumatic event that changes an individual’s basic assumptions about the self as effective and powerful, and the world as benevolent, controllable, and predictable [1, 2]. This event is even more devastating when cancer patients undergo extensive surgeries that severely debilitate their body image and their psychological and social well-being. Muscle-invasive bladder cancer (MIBC) provides a powerful, yet understudied example of the impact that cancer diagnosis and treatments may have on patients’ emotional, physical, functional, and social adjustment .
MIBC may be treated with curative intent by either external beam radiation therapy (with or without chemotherapy) or radical cystectomy, with or without perioperative chemotherapy . In the United States, radical surgery is considered standard of care. Radical cystectomy also remains the treatment of choice for NMIBC refractory to transurethral resection and intravesical therapy, as well as invasive carcinoma of the prostatic urethra. In men, radical surgery traditionally includes the removal of the bladder, prostate, and seminal vesicles; in women the urethra, uterus, cervix, ovaries, fallopian tubes, and anterior vagina have historically been removed along with the bladder [6–10]. In the recent past, however, strategies to preserve sexual and reproductive function in selected patients have led to prostate capsule and seminal vesicle sparing surgery in men and to vaginal sparing surgeries in women with preservation of the reproductive organs based on the patient’s fertility status. Radical cystectomy necessitates urinary diversion using one of three major methods: incontinent cutaneous (e.g., the ileal conduit), continent cutaneous, or orthotopic (e.g., the neobladder) diversion.
A major advantage of the neobladder is that it preserves body image and may be socially desirable more than the ileal conduit and continent reservoir, as it maintains urethral voiding . Patients with neobladder diversion scored better in a scale assessing posttreatment social and physical activities including bathing, sleeping, and travelling and reported fewer sexual problems and barriers than patients with ileal conduit . Although daytime continence is achieved in almost all patients with neobladder diversion, night-time continence is less likely to be achieved. Results from recent research in other patient populations demonstrated the negative impact of night-time incontinence on increased depression and poor quality of life [23, 24]. Additionally, there is evidence that physical impacts of neobladder diversion on QOL vary by gender . Urinary incontinence and deterioration of sexual function are more common among women compared to men following surgery and orthotopic neobladder . Follow-up clinic assessments should examine emotional wellbeing and sexual function among patients regardless of the type of urinary diversion received.
Most of the research on the adjustment to a diagnosis of BC and its treatment has focused on examining perceived HRQOL following treatment. Perceived HRQOL refers to patients’ appraisal of and satisfaction with their current level of physical, emotional, and social functioning as compared to what they perceive to be possible or ideal . In the case of patients subjected to radical cystectomy and urinary diversion, posttreatment QOL and skills needed for posttreatment health care could significantly affect the patient’s choice of the type of urinary diversion form as no significant differences have been determined between the three urinary diversion forms in terms of cancer control and survival rate [11, 29, 30]. In spite of the increased research focus on QOL following cystectomy and urinary diversion, little is known about the psychosocial impact of treatment for MIBC.
After age 30, most organ systems begin exhibiting progressive changes in physiological functioning, even in the absence of disease . These changes result in declines in cognitive, emotional, physical, and social functioning status and affect roughly 60% and 76% of adults ages 65–79 and 80 years and older, respectively. A recent cohort study of older BC patients found that comorbidities, such as, heart disease, stroke, arthritis, and urinary, hearing, and vision problems increased in prevalence with age in this population .
Cancer diagnosis may be considered the archetypal experience of loss and is a continuous threat to the patient’s life. Cancer does not only signify an existential plight; it may arouse extreme negative emotions among those who are affected . Accordingly, patients suffering from cancer or other life-threatening diseases usually need to change goals and disengage from many commitments in order to cope with the multiple medical, social, psychological and financial implications of their conditions. Although previous research among certain cancer populations has examined psychological distress, depression, coping, and emotional adjustment in both newly diagnosed patients and survivors, these issues are essentially unexplored in patients with MIBC [2, 41].
Examining needs among cancer survivors and their family caregivers revealed different areas of unmet needs [2, 42]. These include: psychological needs (i.e., needs for help with emotional issues), health system and information needs, physical and social daily living needs, emotional support, and interpersonal communication needs . Family caregivers of cancer survivors often feel unprepared for the cancer experience, have limited knowledge about what to expect regarding cancer and treatment, and receive little guidance and support from the oncology team about how to provide care and support to the patient during and following treatment [67, 68]. Moreover, among younger and middle-aged family caregivers, worries about job loss, other family responsibilities, limited social activities of daily living, and reduced productivity add to the burden of care giving [66, 68, 69]. Most family caregivers of BC patients, however, are older. This population is especially vulnerable to the emotional and physical impact of caregiving, particularly in the face of their own health problems and limited economical and social resources when compared to younger family caregivers. Older family caregivers are more likely to have comorbid diseases, live on a fixed income, and have a limited social network while they provide care and support for the patient. As a result, older family caregivers are more likely to become fatigued from interrupted night sleep and the emotional burden of caregiving. Poor physical condition, increased depressive symptoms, and greater mortality are risks encountered among older family caregivers [69, 70]. To date, no study has examined determinants of psychological adjustment and needs of BC patient and their family caregiver across various types of urinary diversion.
Given the side effects of radical surgical treatment for MIBC, there is a strong need for consistent and clear communication between care providers and patients/family caregivers. Increasing patient awareness about treatment options, associated risks and benefits, and short-and long-term treatment effects may aid the patient’s decision making and postoperative preparedness. More consistent use of HRQOL instruments in urologic practice, assessment of family caregivers support, and pre- and postsurgical counseling can facilitate patients’ coping and satisfaction. More research is needed to examine both patient and family caregiver needs in the context of age, gender, and diversion type. Identifying these needs preoperatively is vital in providing necessary support to reduce care burden and to ultimately guide the design and evaluation of future psychosocial interventions.
MIBC presents challenges to both the patient and the family caregiver at each step along the disease trajectory; from diagnosis to treatment to survivorship. Patients diagnosed with MIBC are expected to live for the rest of their lives with the physical emotional and social consequences and practical implications of their treatment choices. Consequently, it is important for patients and the family caregivers to understand how different treatment options might influence their quality of life in the short- and the long-term when making these decisions, particularly concerning the urinary diversion. However, the optimal form of urinary diversion is uncertain. Patients and family caregivers need to evaluate imperfect data from various studies and balance perceived benefits of a diversion with the reality of reduced quality of life and added burden of health. The difficulty of making a treatment decision is further compounded by the small window of time between diagnosis and treatment which make seeking 2nd and 3rd experts’ opinions a challenge. Despite the gravity of treatment and the associated side effects and posttreatment care, no study has examined the needs of MIBC survivors and their family caregivers. A proactive approach should be undertaken to prepare the patient and the family caregiver for posttreatment health management, prior to therapy. Such action may facilitate patient decision making and also assist both the patient and family caregiver in coping with difficulties and challenges that arise after treatment.