Ted A. Skolarus, MD, MPH; and Sarah T. Hawley, PhD, MPH
Dr. Skolarus is an assistant professor and Dr. Hawley is an associate professor at the University of Michigan, Ann Arbor. Both Dr. Skolarus and Dr. Hawley are investigators at the VA HSR&D Center for Clinical Management Research, VA Ann Arbor Health Care System.
Improving the quality of prostate cancer survivorship care has the potential to transform the national efficiency and effectiveness of cancer specialty care delivery.
Prostate cancer is the most common cancer diagnosis among U.S. veterans.1 More than 12,000 veterans will be diagnosed with prostate cancer in 2014, to join more than 200,000 veteran survivors.1 Because its incidence increases with age and nearly half of veterans are aged ≥ 65 years, the clinical and economic burdens of prostate cancer are expected to increase.2 Fortunately, > 80% of these men will have local disease with 5-year cancer-specific survivals of 98%.3 Even among the small population of veterans whose disease returns after treatment, < 1 in 5 will die of prostate cancer within 10 years.4
Thus, most men live with prostate cancer and its sequelae rather than die of it, similar to other chronic diseases. In 2003, the VHA outlined a National Cancer Strategy, indicating priorities for quality cancer care and access to care for all veterans with cancer.5 Importantly, this directive recognized prostate cancer as a service-connected condition for men exposed to the herbicide Agent Orange.6 For all these reasons, understanding the delivery of prostate cancer survivorship care has tremendous cost and quality implications for the VHA.
SURVIVORSHIP CARE
Due to the extensive focus on screening and initial treatment, very little prostate cancer survivorship research exists either within or outside VHA. In fact, a 2011 literature review found that < 10 prostate cancer survivorship studies were published annually.7 Because long-term survival is increasingly common after any cancer diagnosis, better understanding cancer survivorship (ie, the chronic care following diagnosis and treatment) and the distinct needs of cancer survivors are central to cancer care quality.8,9
A 2005 breakthrough report from the Institute of Medicine, From Cancer Patient to Cancer Survivor: Lost in Transition, emphasized the distinct issues facing cancer survivors and called for an increased emphasis on cancer survivors and their care from both clinical and research perspectives (Table).10
Due to the expanding population of veteran prostate cancer survivors, this report has increasing relevance to VHA.11 For prostate cancer survivors in particular, up to 70% have persistent symptoms (eg, incontinence, impotence) with some symptoms persisting 15 years after treatment, indicating the need for ongoing care and similarity to other chronic diseases.12,13
Despite this growing need and the universal provider access to electronic medical records, VHA, like most other integrated delivery systems, does not have a systematic organizational approach to deal with its prostate cancer survivors, indicating a tremendous opportunity.
One recent proposal for supporting survivorship care in the VHA is a Patient-Aligned Specialty Team for oncology to provide comprehensive cancer care through tumor boards, multispecialty clinics, care coordinators/navigators, and patient education.14
Symptom Burden
The 3 usual approaches to treatment of prostate cancer are (1) surgery (radical prostatectomy); (2) radiation therapy (brachytherapy or external “beam” radiation); and (3) observation (watchful waiting and active surveillance).15-18 While some men do choose observation initially, ultimately many undergo some form of surgical or radiation treatment.19 Unfortunately, long-term adverse effects (AEs) of these treatments are common and vary by treatment type. Men may experience ongoing problems with urinary control (eg, urinary incontinence), sexual function (eg, impotence), hormonal (eg, fatigue, depression), and bowel function (eg, diarrhea and fecal incontinence) far beyond that of age-matched controls.13,15,20-27
Up to 75% of men report problems with erectile dysfunction after prostatectomy, compared with 25% who receive brachytherapy, and 40% who receive brachytherapy plus external beam radiation.20,22,26,28 Urinary problems include both incontinence and pain with urination, which may improve over time with medical and nonmedical management approaches.26,27 Among patients treated with radiation therapy, between 40% and 55% report urinary problems as long as 8 years posttreatment (incontinence and/or pain).26,27,29,30 Unlike surgery, radiation therapy is also associated with bowel problems posttreatment, including rectal urgency and diarrhea.25,31
Although the greatest symptom burden and associated reduction in quality of life (QOL) occurs initially following treatment, many prostate cancer survivors experience considerable symptom burden for years following treatment.21,22,26,32-35 This persistence of symptoms is documented among thousands of patients after prostate cancer treatment, most of which are nonveterans. For example, among men with prostate cancer and no sexual, urinary, or hormonal problems at baseline, 9% to 83% reported severe problems in at least 1 domain 3 years after treatment with surgery or radiation.36
Gore and colleagues demonstrated persistent symptoms among 475 prostate cancer patients for up to 48 months following initial treatment.27 The Michigan Prostate Cancer Survivor Study, a registry-based survey of 2,500 prostate cancer survivors responding about 9 years postdiagnosis, found that up to 70% reported ongoing problems with AEs, some of whom were more than 15 years removed from primary treatment.12 Addressing these symptoms through medical and self-management approaches is one way to reduce their impact and improve QOL among prostate cancer survivors.
