NEWS & VIEWS Care beyond prostate cancer —improving patient outcomes Mark Frydenberg
Evaluation of patient outcomes does not encompass all survivorship issues after prostate cancer treatment. Addressing the effect that these issues have on men’s lives remains a great challenge; therefore, the American Cancer Society Prostate Cancer Survivorship Care Guidelines are a welcome addition to the medical literature. Frydenberg, M. Nat. Rev. Urol. 11, 669–671 (2014); published online 23 September 2014; doi:10.1038/nrurol.2014.261
According to the National Cancer Survivor ship Initiative there has been a shift in care and support for people living with, and beyond, cancer.1 Greater emphasis has been put on recovery, health and well-being after treatment, information provision, person alized care planning, self-management and changing from purely measuring clinical outcomes after treatment to the routine use of patient reported outcome measures (PROMs) in determining long-term out comes. The importance of these patient reported outcomes is critical given that the treating physician’s perception of healthrelated quality of life (HRQOL) often does not correlate with the patient’s, and also that patients often do not attain their expected HRQOL despite presumed adequate counselling before treatment.2,3
‘‘
…there has been a shift in care and support for people living with, and beyond, cancer
’’
The initial step in determining the quality of care and survivorship requirements of men following treatment for prostate cancer must, therefore, be the accurate recording of PROMs and clinical data after prostate cancer treatment. Studies such as CaPSURE have provided enormous amounts of data to the international prostate cancer community for many years, and these types of investigations are now expanding throughout Asia, Ireland and Australia. This expansion has brought about the need for a standard set of patient outcomes that can then be validated and measured
internationally, and international prostate cancer experts have recently come together with the International Consortium for Health Outcomes Measurement (ICHOM) to develop an ICHOM ‘Standard Set’ of outcomes for localized prostate cancer.4,5 However, whilst these outcomes measure the magnitude of some of the complications of treatment, they do not fully encompass all survivorship issues, nor do they attempt to provide a management solution for these issues. The survivorship issues following a diagnosis of prostate cancer are vast, and resources available to deal with these complications vary according to the type of treatment received (such as surveillance, surgery, radiation, androgen deprivation therapy [ADT] and chemotherapy), stage of disease, patient location (for example urban or rural), insurance status, race, socioeconomic status, level of education, partner support, and sexuality. A study of primary-care providers in the USA demon strated that 67.6% cared for men during and after prostate cancer treatment, and that 45.1% felt it was equally appropriate for them and the treating specialists to provide prostate cancer survivorship care. However, 76.1% felt that plans regarding manage ment of treatment complications were not clear enough and as such, only a minority of these care providers felt comfortable man aging the adverse effects of prostate cancer treatment. 6 The new American Cancer Society prostate cancer survivorship care guidelines7 are, therefore, a welcome addi tion to the medical literature to assist pro viders, especially primary care physicians, in
NATURE REVIEWS | UROLOGY
Monkeybusinessimages/iStock/Thinkstock
PROSTATE CANCER
the care of men after treatment for prostate cancer.7 However, the volume of research in this area remains sparse, and the effect of complications on patient relationships, employment, and finances remain largely unknown. Insufficient information regard ing the patient reported outcomes of men from ethnic minority groups, those who live in rural areas and those who are homo sexual also hampers care for these patients in particular. Many conclusions drawn from the available data might not, therefore, be readily applicable to these groups. The magnitude of these issues and com plications has been well recorded in the literature. But, addressing the effect these complications have on men’s lives, on the lives of their partners and families, and on their ability to access therapies to address these complications remains one of the greatest challenges. Hypothetically, after surgery, a man might have to face urinary incontinence. To maximize care of this condition he could require the assistance of a continence nurse, a pelvic-floor physio therapist or a urologist who specializes in incontinence management (to insert a sub urethral sling or artificial urinary sphinc ter), who might not be the same urologist who performed the initial surgery. In addi tion, this complication might have caused social isolation, depression, loss of employ ment and financial difficulties requiring social work and psychological support. At the other end of the cancer spectrum, a man on ADT could have to contend with weight gain, metabolic syndrome, increased cardio vascular morbidity, erectile dysfunction (ED), loss of libido, osteoporosis, cognitive decline and depression. Studies have shown that moderate-to-high levels of depression VOLUME 11 | DECEMBER 2014
© 2014 Macmillan Publishers Limited. All rights reserved
NEWS & VIEWS are associated with poor sexual outcomes, and elevated levels of distress and anxiety have an association with poor urinary func tion outcomes after surgery.8 Optimal care might be difficult to deliver for patients who receive prostate cancer therapy, owing to this plethora of morbidity and followon effects that can occur after treatment. It remains unclear if cancer specialists are actually meeting the increasing needs of cancer survivors, and clearly models of shared care are required to ensure men are indeed receiving optimal care.
‘‘
Results of this model of care are eagerly anticipated to ensure it is effective…
’’
The American Cancer Society guide lines7 do provide clarity for family physi cians regarding how to monitor patients, and how best to manage them concerning dietary advice, physical activity, nutrition, anxiety and depression, PSA follow-up, management of incontinence, ED, meta bolic syndrome and the effects of ADT and chemot herapy. The main question that arises, however, is: given the complex ity of prostate cancer survivorship, will the primary care physician be in a position to provide and fully coordinate this care on their own? Most family physicians are busy, especially in rural and underserviced areas, and if one accepts this reality, then the
DECEMBER 2014 | VOLUME 11
ability to reassess patients regularly, using validated instruments, and coordinate sur vivorship care, could be unrealistic when that might involve referral to specialist uro logists, endocrinologists, physiotherapists, psychologists, sexual and marital counsel lors, peer-group support, dieticians and exercise physiologists. Thus, it is of con siderable interest that the Prostate Cancer and Mens Health charity, Movember, is initiating a trial program called ‘A Survivor ship Action Partners hip’ (ASAP) across regions of Australia, the United Kingdom and Canada.9 These partnerships are set up where a set of survivorship solutions are agreed, then an ASAP network is established —with a primary-care physician and treat ing specialists providing the central decision making and care coordinators appointed for each patient. The aims of the partnership are for the care coordinator to assist the treating physicians in providing optimum survivorship care for the patient and their families, so that all concerns are addressed, needs are met by timely and appropriate referrals and follow-up, and that a transi tion of the patient to self-m anagement takes place after a period of adequate sup ported care. Results of this model of care are eagerly anticipated to ensure it is effec tive and financially sustainable, but, most of all that the complex issues surrounding the aftermath of prostate cancer treatments can be adequately addressed to improve the lives of men and their families.
Department of Surgery and Urology, Monash University, Clayton, VIC 3168, Australia. [email protected] Competing interests The author declares no competing interests. 1.
Richards, M., Corner, J. & Maher, J. The National Cancer Survivorship Initiative: new and emerging evidence on the ongoing needs of cancer survivors. Br. J. Cancer 105 (Suppl. 1), 1–5 (2011). 2. Sonn, G. A., Sadetsky, N., Presti, J. C. & Litwin, M. S. Differing perception of quality of life in patients with prostate cancer and their doctors. J. Urol. 182, 2296–2302 (2009). 3. Wittmann, D. et al. Patient preoperative expectations of urinary, bowel, hormonal, and sexual functioning do not match actual outcomes 1 year after radical prostatectomy. J. Urol. 186, 494–499 (2011). 4. Evans, S. et al. Patterns of care for men diagnosed with prostate cancer in Victoria from 2008 to 2011. Med. J. Aust. 198, 540–545 (2013). 5. International Consortium for Health Outcomes Measurement. Localized prostate cancer [online], http://www.ichom.org/project/ localized-prostate-cancer/ (2013). 6. Skolarus, T. A. et al. Primary care perspectives on prostate cancer survivorship: implications for improving quality of care. Urol. Oncol. 31, 727–732 (2013). 7. Skolarus, T. A. et al. American Cancer Society prostate cancer survivorship care guidelines. CA Cancer J. Clin. 65, 225–249 (2014). 8. Punnen, S. et al. A Longitudinal study of anxiety, depression and distress as predictors of sexual and urinary quality of life in men with Prostate Cancer. BJU Int. 112, 67–75 (2013). 9. Movember. Living with and beyond prostate cancer [online], http://au.movember.com/ programs/living-with-cancer (2014).
www.nature.com/nrurol © 2014 Macmillan Publishers Limited. All rights reserved
Evaluation of patient outcomes does not encompass all survivorship issues after prostate cancer treatment. Addressing the effect that these issues have on men’s lives remains a great challenge; therefore, the American Cancer Society Prostate Cancer Survivorship Care Guidelines are a welcome addition to the medical literature. Frydenberg, M. Nat. Rev. Urol. 11, 669–671 (2014); published online 23 September 2014; doi:10.1038/nrurol.2014.261
According to the National Cancer Survivor ship Initiative there has been a shift in care and support for people living with, and beyond, cancer.1 Greater emphasis has been put on recovery, health and well-being after treatment, information provision, person alized care planning, self-management and changing from purely measuring clinical outcomes after treatment to the routine use of patient reported outcome measures (PROMs) in determining long-term out comes. The importance of these patient reported outcomes is critical given that the treating physician’s perception of healthrelated quality of life (HRQOL) often does not correlate with the patient’s, and also that patients often do not attain their expected HRQOL despite presumed adequate counselling before treatment.2,3
‘‘
…there has been a shift in care and support for people living with, and beyond, cancer
’’
The initial step in determining the quality of care and survivorship requirements of men following treatment for prostate cancer must, therefore, be the accurate recording of PROMs and clinical data after prostate cancer treatment. Studies such as CaPSURE have provided enormous amounts of data to the international prostate cancer community for many years, and these types of investigations are now expanding throughout Asia, Ireland and Australia. This expansion has brought about the need for a standard set of patient outcomes that can then be validated and measured
internationally, and international prostate cancer experts have recently come together with the International Consortium for Health Outcomes Measurement (ICHOM) to develop an ICHOM ‘Standard Set’ of outcomes for localized prostate cancer.4,5 However, whilst these outcomes measure the magnitude of some of the complications of treatment, they do not fully encompass all survivorship issues, nor do they attempt to provide a management solution for these issues. The survivorship issues following a diagnosis of prostate cancer are vast, and resources available to deal with these complications vary according to the type of treatment received (such as surveillance, surgery, radiation, androgen deprivation therapy [ADT] and chemotherapy), stage of disease, patient location (for example urban or rural), insurance status, race, socioeconomic status, level of education, partner support, and sexuality. A study of primary-care providers in the USA demon strated that 67.6% cared for men during and after prostate cancer treatment, and that 45.1% felt it was equally appropriate for them and the treating specialists to provide prostate cancer survivorship care. However, 76.1% felt that plans regarding manage ment of treatment complications were not clear enough and as such, only a minority of these care providers felt comfortable man aging the adverse effects of prostate cancer treatment. 6 The new American Cancer Society prostate cancer survivorship care guidelines7 are, therefore, a welcome addi tion to the medical literature to assist pro viders, especially primary care physicians, in
NATURE REVIEWS | UROLOGY
Monkeybusinessimages/iStock/Thinkstock
PROSTATE CANCER
the care of men after treatment for prostate cancer.7 However, the volume of research in this area remains sparse, and the effect of complications on patient relationships, employment, and finances remain largely unknown. Insufficient information regard ing the patient reported outcomes of men from ethnic minority groups, those who live in rural areas and those who are homo sexual also hampers care for these patients in particular. Many conclusions drawn from the available data might not, therefore, be readily applicable to these groups. The magnitude of these issues and com plications has been well recorded in the literature. But, addressing the effect these complications have on men’s lives, on the lives of their partners and families, and on their ability to access therapies to address these complications remains one of the greatest challenges. Hypothetically, after surgery, a man might have to face urinary incontinence. To maximize care of this condition he could require the assistance of a continence nurse, a pelvic-floor physio therapist or a urologist who specializes in incontinence management (to insert a sub urethral sling or artificial urinary sphinc ter), who might not be the same urologist who performed the initial surgery. In addi tion, this complication might have caused social isolation, depression, loss of employ ment and financial difficulties requiring social work and psychological support. At the other end of the cancer spectrum, a man on ADT could have to contend with weight gain, metabolic syndrome, increased cardio vascular morbidity, erectile dysfunction (ED), loss of libido, osteoporosis, cognitive decline and depression. Studies have shown that moderate-to-high levels of depression VOLUME 11 | DECEMBER 2014
© 2014 Macmillan Publishers Limited. All rights reserved
NEWS & VIEWS are associated with poor sexual outcomes, and elevated levels of distress and anxiety have an association with poor urinary func tion outcomes after surgery.8 Optimal care might be difficult to deliver for patients who receive prostate cancer therapy, owing to this plethora of morbidity and followon effects that can occur after treatment. It remains unclear if cancer specialists are actually meeting the increasing needs of cancer survivors, and clearly models of shared care are required to ensure men are indeed receiving optimal care.
‘‘
Results of this model of care are eagerly anticipated to ensure it is effective…
’’
The American Cancer Society guide lines7 do provide clarity for family physi cians regarding how to monitor patients, and how best to manage them concerning dietary advice, physical activity, nutrition, anxiety and depression, PSA follow-up, management of incontinence, ED, meta bolic syndrome and the effects of ADT and chemot herapy. The main question that arises, however, is: given the complex ity of prostate cancer survivorship, will the primary care physician be in a position to provide and fully coordinate this care on their own? Most family physicians are busy, especially in rural and underserviced areas, and if one accepts this reality, then the
DECEMBER 2014 | VOLUME 11
ability to reassess patients regularly, using validated instruments, and coordinate sur vivorship care, could be unrealistic when that might involve referral to specialist uro logists, endocrinologists, physiotherapists, psychologists, sexual and marital counsel lors, peer-group support, dieticians and exercise physiologists. Thus, it is of con siderable interest that the Prostate Cancer and Mens Health charity, Movember, is initiating a trial program called ‘A Survivor ship Action Partners hip’ (ASAP) across regions of Australia, the United Kingdom and Canada.9 These partnerships are set up where a set of survivorship solutions are agreed, then an ASAP network is established —with a primary-care physician and treat ing specialists providing the central decision making and care coordinators appointed for each patient. The aims of the partnership are for the care coordinator to assist the treating physicians in providing optimum survivorship care for the patient and their families, so that all concerns are addressed, needs are met by timely and appropriate referrals and follow-up, and that a transi tion of the patient to self-m anagement takes place after a period of adequate sup ported care. Results of this model of care are eagerly anticipated to ensure it is effec tive and financially sustainable, but, most of all that the complex issues surrounding the aftermath of prostate cancer treatments can be adequately addressed to improve the lives of men and their families.
Department of Surgery and Urology, Monash University, Clayton, VIC 3168, Australia. [email protected] Competing interests The author declares no competing interests. 1.
Richards, M., Corner, J. & Maher, J. The National Cancer Survivorship Initiative: new and emerging evidence on the ongoing needs of cancer survivors. Br. J. Cancer 105 (Suppl. 1), 1–5 (2011). 2. Sonn, G. A., Sadetsky, N., Presti, J. C. & Litwin, M. S. Differing perception of quality of life in patients with prostate cancer and their doctors. J. Urol. 182, 2296–2302 (2009). 3. Wittmann, D. et al. Patient preoperative expectations of urinary, bowel, hormonal, and sexual functioning do not match actual outcomes 1 year after radical prostatectomy. J. Urol. 186, 494–499 (2011). 4. Evans, S. et al. Patterns of care for men diagnosed with prostate cancer in Victoria from 2008 to 2011. Med. J. Aust. 198, 540–545 (2013). 5. International Consortium for Health Outcomes Measurement. Localized prostate cancer [online], http://www.ichom.org/project/ localized-prostate-cancer/ (2013). 6. Skolarus, T. A. et al. Primary care perspectives on prostate cancer survivorship: implications for improving quality of care. Urol. Oncol. 31, 727–732 (2013). 7. Skolarus, T. A. et al. American Cancer Society prostate cancer survivorship care guidelines. CA Cancer J. Clin. 65, 225–249 (2014). 8. Punnen, S. et al. A Longitudinal study of anxiety, depression and distress as predictors of sexual and urinary quality of life in men with Prostate Cancer. BJU Int. 112, 67–75 (2013). 9. Movember. Living with and beyond prostate cancer [online], http://au.movember.com/ programs/living-with-cancer (2014).
www.nature.com/nrurol © 2014 Macmillan Publishers Limited. All rights reserved
