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Incorporating the Patient into Urologic Cancer Research
Urologic Oncology: Seminars and Original Investigations 35 (2017) 546–547
Seminars article
Incorporating the Patient into Urologic Cancer Research John L. Gore, M.D., M.S.⁎ Department of Urology, University of Washington, Seattle Cancer Care Alliance, Seattle, WA Received 3 August 2017; accepted 4 August 2017
Abstract Patient engagement in research has been increasingly prioritized by funders and adopted by health researchers. In this Seminars issue, we explore several different mechanisms of engagement in the reciprocal relationship between patients and researchers. This includes the generation of understandable patient health information, how patients engage in treatment decision-making for urologic cancers, patient involvement in the development of research ideas and research design, and patient engagement in their personalized survivorship care. r 2017 Elsevier Inc. All rights reserved.
Keywords: Patient-centered outcomes research; Urologic oncology; Patient-reported outcomes
A new cancer diagnosis challenges patients and their caregivers to become engaged in a complex decisionmaking process. Many of the cancers we treat in urologic oncology are preference-sensitive conditions prone to both patient and provider priorities with respect to treatment morbidity and health-related quality of life. As such, treatment of prostate cancer, bladder cancer, and kidney cancer is prone to immense variations [1–5]. These variations in care may represent health care inefficiencies that are sources of excessive expenditures [6]. Better engagement of patients in health care delivery may address many of these observed variations. In a conceptual model of shared decision-making [7], which leads to higher quality perception of treatment decisions on the part of both patients and providers [8], knowledge for ones' health conditions is associated with clarification of decisional needs, decision quality, and decision support [7]. The creation of workflows that enable communication between more knowledgeable and engaged patients with clinicians and researchers would facilitate new research that addresses the needs of patients, using patientcentered methods, and assessing patient-centered outcomes. In this special issue of Urologic Oncology: Seminars and Orginal Investigations, we present 5 articles that will demonstrate different approaches to patient-centered ⁎
Corresponding author. Tel.: þ1-206-221-6430; fax: þ206-543-3272. E-mail address: [email protected] (J. L. Gore) http://dx.doi.org/10.1016/j.urolonc.2017.08.003 1078-1439/r 2017 Elsevier Inc. All rights reserved.
outcomes research that progress urologic cancer research from idea generation to presentation of health information and treatment decision-making to survivorship care. Much of the focus on patient-centered outcomes research derives from priority setting by funders. The patientcentered outcomes research institute (PCORI), created as part of the affordable care act and perpetuated by a trust fund which includes contributions from health care payers, has enunciated the need for greater patient involvement and engagement in research. PCORI aspires to fund research that helps patients identify the right treatment at the right time and with the right provider for their health condition. PCORI also funds work to increase the capacity of patient organizations to engage in research. In this Seminars issue, Drs Filippou and Smith describe the product of one of these awards, the development and implementation of the bladder cancer advocacy network (BCAN) patient survey network (PSN) that harnesses a large online forum to conduct research prioritization with bladder cancer patients across the spectrum of bladder cancer care. The products of the BCAN PSN provide clarity to funders and researchers about the research questions that are important to patients and caregivers with bladder cancer. Once a research question has been selected, the study design is usually the exclusive domain of the researcher methodologic expert. Drs Lee, Avulova, Conwill, and Barocas describe a contemporary comparative effectiveness
J.L. Gore / Urologic Oncology: Seminars and Original Investigations 35 (2017) 546–547
research study in prostate cancer in which patients were involved in the study design, selection of study outcomes, and presentation of study results from conception to scientific presentation. Patient input can inform the feasibility of various study designs that could help avert past problems in urologic oncology with study accrual [9]. Similarly, patient input can guide prioritization of study endpoints to ensure that the study design addresses the outcomes that will matter most to patients once the study is completed. Lastly, patients can identify formats and fora for study dissemination that expose a broader audience to the research findings. Ideally, these research findings make their way into clinical practice through clinical decision support tools. Recent development of meaningful use criteria for electronic health records have provided patients with access to their health information through personal health records (PHRs). These PHRs might be an ideal forum for these tools. Drs Odisho and Gore describe a systematic process for the design and implementation of patient-centered tools for urologic cancer care. Drs Laviana, Pannell, Huen, and Bergman review the current state of available patient-centered decision aids. These aids aspire to help patients decide between treatments with competing adverse effects such as weighing the balance between external beam radiation therapy and radical prostatectomy for localized prostate cancer. Yet the authors identify numerous gaps in care for patients confronting complex decisions including implementation barriers to use of existing decision aids, tools for bladder, kidney, and testicular cancers, decision aids for patients with recurrent and advanced cancers, and balancing the cost and effectiveness tradeoffs of newer therapies such as immune oncology agents. Lastly, patients who have successfully navigated decision-making for a new cancer diagnosis and have undergone treatment transition into survivorship care. The most robust example of the long-term sequelae of urologic cancer treatment is prostate cancer care. Downstream adverse effects of prostate cancer and its treatment include urinary incontinence, sexual dysfunction, bowel dysfunction,
547
fatigue, and pain. Beyond provision of high-quality surgery or radiation, clinicians must provide high-quality survivorship care. Drs Skolarus, Wittmann, and Hawley describe a process for emboldening the self-management of men treated for prostate cancer. Outcomes that may benefit from consideration of prostate cancer care as a chronic condition as described by the chronic care model include better symptom management, differential use of secondary therapies for the symptom detriments of prostate cancer treatment, and improved health-related quality of life. Patient-centered outcomes research in urologic cancer care is changing how we generate and design research studies in urologic oncology. These projects have potential to improve the clinical and survivorship care of men and women with urologic malignancies.
References [1] Krupski TL, Kwan L, Afifi AA, & Litwin MS. Geographic and socioeconomic variation in the treatment of prostate cancer. J Clin Oncol 2005;23:7881–8. [2] Cooperberg MR, & Carroll PR. Trends in management for patients with localized prostate cancer, 1990-2013. J Am Med Assoc 2015;314:80–2. [3] Gore JL, Litwin MS, Lai J, et al. Use of radical cystectomy for patients with invasive bladder cancer. J Natl Cancer Inst 2010;102:802–11. [4] Miller DC, Saigal CS, Banerjee M, Hanley J, & Litwin MS. Urologic Diseases in America Project. Diffusion of surgical innovation among patients with kidney cancer. Cancer 2008;112:1708–17. [5] Filson CP, Banerjee M, Wolf JS Jr, et al. Surgeon characteristics and long-term trends in the adoption of laparoscopic radical nephrectomy. J Urol 2011;185:2072–7. [6] Yeung C, Dinh T, & Lee J. The health economics of bladder cancer: an updated review of the published literature. Pharmacoeconomics 2014;32:1093–104. [7] O'Connor AM, Tugwell P, Wells G, Elmslie T, Jolly E, & Hollingsworth G. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Counsel 1998;33:267–79. [8] Makarov D, Chrouser K, Gore J, et al. AUA white paper on implementation of shared decision making into urological practice. Urol Pract 2016;3:355–63. [9] Thompson IM Jr, & Tangen CM. Prostate cancer—uncertainty and a way forward. N Engl J Med 2012;367:270–1.
Seminars article
Incorporating the Patient into Urologic Cancer Research John L. Gore, M.D., M.S.⁎ Department of Urology, University of Washington, Seattle Cancer Care Alliance, Seattle, WA Received 3 August 2017; accepted 4 August 2017
Abstract Patient engagement in research has been increasingly prioritized by funders and adopted by health researchers. In this Seminars issue, we explore several different mechanisms of engagement in the reciprocal relationship between patients and researchers. This includes the generation of understandable patient health information, how patients engage in treatment decision-making for urologic cancers, patient involvement in the development of research ideas and research design, and patient engagement in their personalized survivorship care. r 2017 Elsevier Inc. All rights reserved.
Keywords: Patient-centered outcomes research; Urologic oncology; Patient-reported outcomes
A new cancer diagnosis challenges patients and their caregivers to become engaged in a complex decisionmaking process. Many of the cancers we treat in urologic oncology are preference-sensitive conditions prone to both patient and provider priorities with respect to treatment morbidity and health-related quality of life. As such, treatment of prostate cancer, bladder cancer, and kidney cancer is prone to immense variations [1–5]. These variations in care may represent health care inefficiencies that are sources of excessive expenditures [6]. Better engagement of patients in health care delivery may address many of these observed variations. In a conceptual model of shared decision-making [7], which leads to higher quality perception of treatment decisions on the part of both patients and providers [8], knowledge for ones' health conditions is associated with clarification of decisional needs, decision quality, and decision support [7]. The creation of workflows that enable communication between more knowledgeable and engaged patients with clinicians and researchers would facilitate new research that addresses the needs of patients, using patientcentered methods, and assessing patient-centered outcomes. In this special issue of Urologic Oncology: Seminars and Orginal Investigations, we present 5 articles that will demonstrate different approaches to patient-centered ⁎
Corresponding author. Tel.: þ1-206-221-6430; fax: þ206-543-3272. E-mail address: [email protected] (J. L. Gore) http://dx.doi.org/10.1016/j.urolonc.2017.08.003 1078-1439/r 2017 Elsevier Inc. All rights reserved.
outcomes research that progress urologic cancer research from idea generation to presentation of health information and treatment decision-making to survivorship care. Much of the focus on patient-centered outcomes research derives from priority setting by funders. The patientcentered outcomes research institute (PCORI), created as part of the affordable care act and perpetuated by a trust fund which includes contributions from health care payers, has enunciated the need for greater patient involvement and engagement in research. PCORI aspires to fund research that helps patients identify the right treatment at the right time and with the right provider for their health condition. PCORI also funds work to increase the capacity of patient organizations to engage in research. In this Seminars issue, Drs Filippou and Smith describe the product of one of these awards, the development and implementation of the bladder cancer advocacy network (BCAN) patient survey network (PSN) that harnesses a large online forum to conduct research prioritization with bladder cancer patients across the spectrum of bladder cancer care. The products of the BCAN PSN provide clarity to funders and researchers about the research questions that are important to patients and caregivers with bladder cancer. Once a research question has been selected, the study design is usually the exclusive domain of the researcher methodologic expert. Drs Lee, Avulova, Conwill, and Barocas describe a contemporary comparative effectiveness
J.L. Gore / Urologic Oncology: Seminars and Original Investigations 35 (2017) 546–547
research study in prostate cancer in which patients were involved in the study design, selection of study outcomes, and presentation of study results from conception to scientific presentation. Patient input can inform the feasibility of various study designs that could help avert past problems in urologic oncology with study accrual [9]. Similarly, patient input can guide prioritization of study endpoints to ensure that the study design addresses the outcomes that will matter most to patients once the study is completed. Lastly, patients can identify formats and fora for study dissemination that expose a broader audience to the research findings. Ideally, these research findings make their way into clinical practice through clinical decision support tools. Recent development of meaningful use criteria for electronic health records have provided patients with access to their health information through personal health records (PHRs). These PHRs might be an ideal forum for these tools. Drs Odisho and Gore describe a systematic process for the design and implementation of patient-centered tools for urologic cancer care. Drs Laviana, Pannell, Huen, and Bergman review the current state of available patient-centered decision aids. These aids aspire to help patients decide between treatments with competing adverse effects such as weighing the balance between external beam radiation therapy and radical prostatectomy for localized prostate cancer. Yet the authors identify numerous gaps in care for patients confronting complex decisions including implementation barriers to use of existing decision aids, tools for bladder, kidney, and testicular cancers, decision aids for patients with recurrent and advanced cancers, and balancing the cost and effectiveness tradeoffs of newer therapies such as immune oncology agents. Lastly, patients who have successfully navigated decision-making for a new cancer diagnosis and have undergone treatment transition into survivorship care. The most robust example of the long-term sequelae of urologic cancer treatment is prostate cancer care. Downstream adverse effects of prostate cancer and its treatment include urinary incontinence, sexual dysfunction, bowel dysfunction,
547
fatigue, and pain. Beyond provision of high-quality surgery or radiation, clinicians must provide high-quality survivorship care. Drs Skolarus, Wittmann, and Hawley describe a process for emboldening the self-management of men treated for prostate cancer. Outcomes that may benefit from consideration of prostate cancer care as a chronic condition as described by the chronic care model include better symptom management, differential use of secondary therapies for the symptom detriments of prostate cancer treatment, and improved health-related quality of life. Patient-centered outcomes research in urologic cancer care is changing how we generate and design research studies in urologic oncology. These projects have potential to improve the clinical and survivorship care of men and women with urologic malignancies.
References [1] Krupski TL, Kwan L, Afifi AA, & Litwin MS. Geographic and socioeconomic variation in the treatment of prostate cancer. J Clin Oncol 2005;23:7881–8. [2] Cooperberg MR, & Carroll PR. Trends in management for patients with localized prostate cancer, 1990-2013. J Am Med Assoc 2015;314:80–2. [3] Gore JL, Litwin MS, Lai J, et al. Use of radical cystectomy for patients with invasive bladder cancer. J Natl Cancer Inst 2010;102:802–11. [4] Miller DC, Saigal CS, Banerjee M, Hanley J, & Litwin MS. Urologic Diseases in America Project. Diffusion of surgical innovation among patients with kidney cancer. Cancer 2008;112:1708–17. [5] Filson CP, Banerjee M, Wolf JS Jr, et al. Surgeon characteristics and long-term trends in the adoption of laparoscopic radical nephrectomy. J Urol 2011;185:2072–7. [6] Yeung C, Dinh T, & Lee J. The health economics of bladder cancer: an updated review of the published literature. Pharmacoeconomics 2014;32:1093–104. [7] O'Connor AM, Tugwell P, Wells G, Elmslie T, Jolly E, & Hollingsworth G. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Counsel 1998;33:267–79. [8] Makarov D, Chrouser K, Gore J, et al. AUA white paper on implementation of shared decision making into urological practice. Urol Pract 2016;3:355–63. [9] Thompson IM Jr, & Tangen CM. Prostate cancer—uncertainty and a way forward. N Engl J Med 2012;367:270–1.