- Email: [email protected]
Prostate Cancer Units: The Patients’ Perspective
EUROPEAN UROLOGY 60 (2011) 1200–1201
available at www.sciencedirect.com journal homepage: www.europeanurology.com
Editorial
Prostate Cancer Units: The Patients’ Perspective Louis Denis a,b,c,* a
Oncology Centre Antwerp (OCA), Antwerp, Belgium; b Europa Uomo, Antwerp, Belgium; c Wij Ook/US TOO, Antwerp, Belgium
Optimal medical treatment and personalized, holistic patient care in an even balance is the ultimate management vision of Europa Uomo, the European prostate cancer coalition, for all patients diagnosed with prostate cancer (PCa). No matter how well informed they are by the treating physician who supplies brochures and decision aids, patients still experience anxiety and stress, which they try to hide from their physician and loved ones in the days following the diagnosis. This emotional reaction is many times enhanced by the fact that PCa is mostly diagnosed in men >65 yr who are facing recent retirement, physical decline, perceived loss of social esteem, and a new start in life as a senior citizen. Most of them claim to prefer the truth about their diagnosis and its consequences while sometimes ignoring they need professional and caring support to face this truth. Even when well informed about the probable cure and/or control of PCa, they panic at the thought of losing their potency and urine continence because of the proposed treatments. With these thoughts flashing through their minds, they want to hear about their chances of surviving the disease and about their new quality of life after treatment [1]. The professional advice and support grounded in evidence-based medicine is the easiest part of the dialogue. We always provide a short but clear overview of the three main prostate diseases—prostatitis, benign prostate hyperplasia (BPH), and PCa—and their relationship to prostatespecific antigen (PSA) levels. The emphasis on the fact that we diagnose more BPH then PCa has an immediate calming effect on the patient concerned with so-called abnormal PSA results. A short paragraph on the impeccable urologic track record of BPH treatment, with zero mortality and excellent quality-of-life outcomes, is a good introduction to a PCa diagnosis. The second emphasis is on the idea that PCa is a complex disease with different biologic forms. The knowledge that most forms are indolent or low risk, as
compared with intermediate or high risk, leads to an optimistic dialogue about prognostic factors and primary treatments [2]. Some optimism and clarity are needed, as our increased knowledge about prognostic factors and the many forms of primary treatment, ranging from active surveillance to combination treatments of surgery and radiation therapy, make a shared treatment decision a complex issue in the doctor–patient dialogue. There are few facts and many uncertainties that require the expertise of teamwork focused on the individual patient. There is medical and societal consensus that cancer is best treated by a multidisciplinary team, confirming the improved outcome results recorded in multidisciplinary clinical trials [3,4]. The launch and development of PCa units (PCUs), as proposed and functioning in Germany and the United States, may be a valid solution to meeting this challenge (pers. comm., G. Feick, Zertifizierung von Prostatakarzinomzentren) [5]. There are obvious benefits to integrated cancer management for patients in a one-stop shop in which a full state-of-the-art program provides not only consultation with different experts on diagnosis and treatment but also access to innovative, tested health technology [6]. This kind of organization may finally deliver the eagerly awaited oncologic and functional outcomes of PCa treatment based on prospective data open to professional and public scrutiny. Most of our big hospitals are familiar with tumor boards, which are mandatory in Belgium [7], but few have the human and financial resources to match the proposed requirements [6]. Doing so will require a simultaneous reorganization of the PCa services in the hospitals and adaptation of the practicing physicians from individual to team players. The physician may lose some autonomy in turning into a team player and thus lose the ‘‘colloque singulier,’’ the personal bond of trust between doctor and patient. This loss
* Lange Gasthuisstraat 35–37, 2000 Antwerp, Belgium. Tel. +32 3 338 91 50; Fax: +32 3 338 91 52. E-mail address: [email protected]. 0302-2838/$ – see back matter # 2011 European Association of Urology. Published by Elsevier B.V. All rights reserved.
doi:10.1016/j.eururo.2011.08.053
1201
EUROPEAN UROLOGY 60 (2011) 1200–1201
is a direct consequence of our advanced health technology setting, in which the patient puts blind trust in the hands of an acknowledged expert. This trend is reflected in modern life, where public trust is high in fire brigades and doctors and is low in politicians and bankers. Can we protect our holistic, patient-centered care while developing PCUs? The interaction between tumor-centered treatment and patient-centered care is at the heart of our social health system. The model should connect intramural (hospital) and extramural (civil society) services. The latter category includes resident specialists, general practitioners, home care nurses, social insurance institutions, and patient support groups, all of whom are active in patient care and health prevention outside the hospital. Thus, we prefer the term multiprofessional over multidisciplinary. Two factors facilitate the link between medical management and patient care. Health literacy is one of most underrated factors in improved outcomes [8]. It is not easy to provide practical, relevant, up-to-date, and evidencebased information on the specific situation of the patient in the different phases of the disease. Europa Uomo receives most information on medical innovations and research from its international scientific board. This information is personally presented to the board of directors at the annual meeting of the European Association of Urology and serves as a basis for our Web site information and education as well as for our annual new key points on PCa [9]. This policy is simple and successful and is the recommended procedure for our national members. It is obvious that patients need a trusted guide in the labyrinth of medical management. This guide usually is the general practitioner, who will be briefed by an assigned coordinator (a doctor or nurse) in the PCU setting. When we launched the Proactive Prostate Initiative Call Out in 2009, focusing on partnership in tailored individual treatment, inequalities in medical treatment, and government-supported research, an interactive partnership network followed. Our professional partners take responsibility for establishing guidelines on all aspects of medical management, while for patient-centered care we stick to the logo of the European Cancer Patient Coalition: ‘‘Nothing about us without us.’’ While we see our responsibility growing from fulfilling simple patient obligations to facilitating translational and basic research in prostate diseases and saving scarce health resources, we honor our manifesto on goals by emphasizing a mission to find ways and means to promote quality of life for PCa patients and their families. Rather than following the guidelines to achieve the optimal medical treatment, patients have the right to refuse treatment or to tailor the treatment to their needs. We plead to treat the man first and then his cancer. These conclusions are not based solely on personal emotions but have some rational basis. PCa differs from other cancers in that many cases are not life threatening. Many cases of PCa do not need to be treated, and this results in multiple choices for primary treatment options.
It is obvious that a cancer diagnosis can lead to depression and anxiety, other psychological and physical distress, and social and financial problems. Many newly diagnosed PCa patients carry the burden of other lethal diseases. Physicians should find the proper time and occasion to show empathy and move gradually to announcing the final diagnosis and/or shared decision making about any primary treatment, including active surveillance or watchful waiting. One key advantage in PCa is the notion that there is plenty of time for a complete physical and psychological work-up before moving to treatment. Again, the provision of accurate, relevant, and evidencebased written information is an important service to patients and their families or friends. It provides a sound base for open and sensitive communication leading to ultimate patient satisfaction. These decision aids can be complemented by the support of a patient group and its specific competence. PCUs should be developed around the patients’ pathways where the patient-centered, holistic approach provides optimal management. Last but not least, we want to emphasize the facilitating role that nursing and patient groups can play between the PCU and community medical practices as well as social care. Many patients share the same emotions and appreciate the support, coping education, and actions to solve problems such as inequality or ignorance of health care authorities. The development of PCUs provides the opportunity for a best practice forum with transparent pathways and outcomes. Conflicts of interest: The author has nothing to disclose.
References [1] Denis L, Steven J, Bossi A, et al. PCA: prostate cancer, patient-centred approach or both? BJU Int. Submitted. [2] Denis L, Roobol M, Dourcy-Belle-Rose B. Prostate cancer from the horizon of the patient. Acta Oncol 2011;50:148–54. [3] Mottet N, Bellmunt J, Bolla M, et al. EAU guidelines on prostate cancer. Part II: treatment of advanced, relapsing, and castrationresistant prostate cancer. Eur Urol 2011;59:572–83. [4] McVie JG. Why clinical trials? Eur J Surg Oncol 1995;21:9–10. [5] Gomella LG, Lin J, Hoffman-Censits J, et al. Enhancing prostate cancer care through the multidisciplinary clinic approach: a 15-year experience. J Oncol Pract 2010;6:e5–10. [6] Valdagni R, Albers P, Bangma C, et al. The requirements of a specialist prostate cancer unit: a discussion paper from the European School of Oncology. Eur J Cancer 2011;47:1–7. [7] Van Belle S. How to implement the multidisciplinary approach in prostate
cancer
management:
the
Belgian
model.
BJU
Int
2008;101(Suppl 2):2–4. [8] Redmond K. Patients need information: is that clear? Cancerworld 2010;43:3. [9] The European Prostate Cancer Coalition. Europa Uomo Web site. http://www.europa-uomo.org.
available at www.sciencedirect.com journal homepage: www.europeanurology.com
Editorial
Prostate Cancer Units: The Patients’ Perspective Louis Denis a,b,c,* a
Oncology Centre Antwerp (OCA), Antwerp, Belgium; b Europa Uomo, Antwerp, Belgium; c Wij Ook/US TOO, Antwerp, Belgium
Optimal medical treatment and personalized, holistic patient care in an even balance is the ultimate management vision of Europa Uomo, the European prostate cancer coalition, for all patients diagnosed with prostate cancer (PCa). No matter how well informed they are by the treating physician who supplies brochures and decision aids, patients still experience anxiety and stress, which they try to hide from their physician and loved ones in the days following the diagnosis. This emotional reaction is many times enhanced by the fact that PCa is mostly diagnosed in men >65 yr who are facing recent retirement, physical decline, perceived loss of social esteem, and a new start in life as a senior citizen. Most of them claim to prefer the truth about their diagnosis and its consequences while sometimes ignoring they need professional and caring support to face this truth. Even when well informed about the probable cure and/or control of PCa, they panic at the thought of losing their potency and urine continence because of the proposed treatments. With these thoughts flashing through their minds, they want to hear about their chances of surviving the disease and about their new quality of life after treatment [1]. The professional advice and support grounded in evidence-based medicine is the easiest part of the dialogue. We always provide a short but clear overview of the three main prostate diseases—prostatitis, benign prostate hyperplasia (BPH), and PCa—and their relationship to prostatespecific antigen (PSA) levels. The emphasis on the fact that we diagnose more BPH then PCa has an immediate calming effect on the patient concerned with so-called abnormal PSA results. A short paragraph on the impeccable urologic track record of BPH treatment, with zero mortality and excellent quality-of-life outcomes, is a good introduction to a PCa diagnosis. The second emphasis is on the idea that PCa is a complex disease with different biologic forms. The knowledge that most forms are indolent or low risk, as
compared with intermediate or high risk, leads to an optimistic dialogue about prognostic factors and primary treatments [2]. Some optimism and clarity are needed, as our increased knowledge about prognostic factors and the many forms of primary treatment, ranging from active surveillance to combination treatments of surgery and radiation therapy, make a shared treatment decision a complex issue in the doctor–patient dialogue. There are few facts and many uncertainties that require the expertise of teamwork focused on the individual patient. There is medical and societal consensus that cancer is best treated by a multidisciplinary team, confirming the improved outcome results recorded in multidisciplinary clinical trials [3,4]. The launch and development of PCa units (PCUs), as proposed and functioning in Germany and the United States, may be a valid solution to meeting this challenge (pers. comm., G. Feick, Zertifizierung von Prostatakarzinomzentren) [5]. There are obvious benefits to integrated cancer management for patients in a one-stop shop in which a full state-of-the-art program provides not only consultation with different experts on diagnosis and treatment but also access to innovative, tested health technology [6]. This kind of organization may finally deliver the eagerly awaited oncologic and functional outcomes of PCa treatment based on prospective data open to professional and public scrutiny. Most of our big hospitals are familiar with tumor boards, which are mandatory in Belgium [7], but few have the human and financial resources to match the proposed requirements [6]. Doing so will require a simultaneous reorganization of the PCa services in the hospitals and adaptation of the practicing physicians from individual to team players. The physician may lose some autonomy in turning into a team player and thus lose the ‘‘colloque singulier,’’ the personal bond of trust between doctor and patient. This loss
* Lange Gasthuisstraat 35–37, 2000 Antwerp, Belgium. Tel. +32 3 338 91 50; Fax: +32 3 338 91 52. E-mail address: [email protected]. 0302-2838/$ – see back matter # 2011 European Association of Urology. Published by Elsevier B.V. All rights reserved.
doi:10.1016/j.eururo.2011.08.053
1201
EUROPEAN UROLOGY 60 (2011) 1200–1201
is a direct consequence of our advanced health technology setting, in which the patient puts blind trust in the hands of an acknowledged expert. This trend is reflected in modern life, where public trust is high in fire brigades and doctors and is low in politicians and bankers. Can we protect our holistic, patient-centered care while developing PCUs? The interaction between tumor-centered treatment and patient-centered care is at the heart of our social health system. The model should connect intramural (hospital) and extramural (civil society) services. The latter category includes resident specialists, general practitioners, home care nurses, social insurance institutions, and patient support groups, all of whom are active in patient care and health prevention outside the hospital. Thus, we prefer the term multiprofessional over multidisciplinary. Two factors facilitate the link between medical management and patient care. Health literacy is one of most underrated factors in improved outcomes [8]. It is not easy to provide practical, relevant, up-to-date, and evidencebased information on the specific situation of the patient in the different phases of the disease. Europa Uomo receives most information on medical innovations and research from its international scientific board. This information is personally presented to the board of directors at the annual meeting of the European Association of Urology and serves as a basis for our Web site information and education as well as for our annual new key points on PCa [9]. This policy is simple and successful and is the recommended procedure for our national members. It is obvious that patients need a trusted guide in the labyrinth of medical management. This guide usually is the general practitioner, who will be briefed by an assigned coordinator (a doctor or nurse) in the PCU setting. When we launched the Proactive Prostate Initiative Call Out in 2009, focusing on partnership in tailored individual treatment, inequalities in medical treatment, and government-supported research, an interactive partnership network followed. Our professional partners take responsibility for establishing guidelines on all aspects of medical management, while for patient-centered care we stick to the logo of the European Cancer Patient Coalition: ‘‘Nothing about us without us.’’ While we see our responsibility growing from fulfilling simple patient obligations to facilitating translational and basic research in prostate diseases and saving scarce health resources, we honor our manifesto on goals by emphasizing a mission to find ways and means to promote quality of life for PCa patients and their families. Rather than following the guidelines to achieve the optimal medical treatment, patients have the right to refuse treatment or to tailor the treatment to their needs. We plead to treat the man first and then his cancer. These conclusions are not based solely on personal emotions but have some rational basis. PCa differs from other cancers in that many cases are not life threatening. Many cases of PCa do not need to be treated, and this results in multiple choices for primary treatment options.
It is obvious that a cancer diagnosis can lead to depression and anxiety, other psychological and physical distress, and social and financial problems. Many newly diagnosed PCa patients carry the burden of other lethal diseases. Physicians should find the proper time and occasion to show empathy and move gradually to announcing the final diagnosis and/or shared decision making about any primary treatment, including active surveillance or watchful waiting. One key advantage in PCa is the notion that there is plenty of time for a complete physical and psychological work-up before moving to treatment. Again, the provision of accurate, relevant, and evidencebased written information is an important service to patients and their families or friends. It provides a sound base for open and sensitive communication leading to ultimate patient satisfaction. These decision aids can be complemented by the support of a patient group and its specific competence. PCUs should be developed around the patients’ pathways where the patient-centered, holistic approach provides optimal management. Last but not least, we want to emphasize the facilitating role that nursing and patient groups can play between the PCU and community medical practices as well as social care. Many patients share the same emotions and appreciate the support, coping education, and actions to solve problems such as inequality or ignorance of health care authorities. The development of PCUs provides the opportunity for a best practice forum with transparent pathways and outcomes. Conflicts of interest: The author has nothing to disclose.
References [1] Denis L, Steven J, Bossi A, et al. PCA: prostate cancer, patient-centred approach or both? BJU Int. Submitted. [2] Denis L, Roobol M, Dourcy-Belle-Rose B. Prostate cancer from the horizon of the patient. Acta Oncol 2011;50:148–54. [3] Mottet N, Bellmunt J, Bolla M, et al. EAU guidelines on prostate cancer. Part II: treatment of advanced, relapsing, and castrationresistant prostate cancer. Eur Urol 2011;59:572–83. [4] McVie JG. Why clinical trials? Eur J Surg Oncol 1995;21:9–10. [5] Gomella LG, Lin J, Hoffman-Censits J, et al. Enhancing prostate cancer care through the multidisciplinary clinic approach: a 15-year experience. J Oncol Pract 2010;6:e5–10. [6] Valdagni R, Albers P, Bangma C, et al. The requirements of a specialist prostate cancer unit: a discussion paper from the European School of Oncology. Eur J Cancer 2011;47:1–7. [7] Van Belle S. How to implement the multidisciplinary approach in prostate
cancer
management:
the
Belgian
model.
BJU
Int
2008;101(Suppl 2):2–4. [8] Redmond K. Patients need information: is that clear? Cancerworld 2010;43:3. [9] The European Prostate Cancer Coalition. Europa Uomo Web site. http://www.europa-uomo.org.