Defining a Standard Set of Patient-centered Outcomes for Men with Localized Prostate Cancer

Martin, Neil E.; Massey, Laura; Stowell, Caleb; Bangma, Chris H.; Briganti, Alberto; Bill‐Axelson, Anna; Blute, Michael L.; Catto, James W.F.; Chen, Ronald C.; D’Amico, Anthony V.; Feick, Günter; Fitzpatrick, John M.; Frank, Steven J.; Froehner, Michael; Frydenberg, Mark; Glaser, Adam; Graefen, Markus; Hamstra, Daniel A.; Kibel, Adam S.; Mendenhall, Nancy P.; Moretti, Kim; Ramon, Jacob; Roos, Ian; Sandler, Howard M.; Sullivan, Frank; Swanson, David A.; Tewari, Ashutosh; Vickers, Andrew J.; Wiegel, Thomas; Huland, Hartwig

doi:10.1016/j.eururo.2014.08.075

Cited by 209 publications

(139 citation statements)

References 26 publications

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“…It would be valuable to have more information on those methods, such as how the number of patients and other stakeholders was decided; how patients were identified, selected and involved in the process; how final decisions of the inclusion of an outcome were made [41]. In addition, it is important to know how the measuring tools were selected.…”

Section: Future Science Groupmentioning

confidence: 99%

Improving the relevance and consistency of outcomes in comparative effectiveness research

et al. 2016

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Policy makers have clearly indicated -through heavy investment in the Patient Centered Outcomes Research Institute -that reporting outcomes that are meaningful to patients is crucial for improvement in healthcare delivery and cost reduction. Better interpretation and generalizability of clinical research results that incorporate patient-centered outcomes research can be achieved by accelerating the development and uptake of core outcome sets (COS). COS provide a standardized minimum set of the outcomes that should be measured and reported in all clinical trials of a specific condition. The level of activity around COS has increased significantly over the past decade, with substantial progress in several clinical domains. However, there are many important clinical conditions for which high-quality COS have not been developed and there are limited resources and capacity with which to develop them. We believe that meaningful progress toward the goals behind the significant investments in patient-centered outcomes research and comparative effectiveness research will depend on a serious effort to address these issues.

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Section: Future Science Groupmentioning

confidence: 99%

Improving the relevance and consistency of outcomes in comparative effectiveness research

et al. 2016

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“…Sexual dysfunction and urinary incontinence and/or irritative symptoms are common long-term sequelae after PCa treatment [35,95]. Since the incidence of erectile dysfunction and urinary incontinence may vary substantially according to definition, the use of patient-reported outcomes and validated questionnaires is preferred [96][97][98][99][100]. In this context, many prospective disease-specific registries adopt validated instruments to measure health-related outcomes at baseline and during follow-up [15,35,38,39].…”

Section: 4mentioning

confidence: 99%

Prostate Cancer Registries: Current Status and Future Directions

Gandaglia¹,

Bray

Cooperberg

et al. 2016

European Urology

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Context: Disease-specific registries that enroll a considerable number of patients play a major role in prostate cancer (PCa) research. Objective: To evaluate available registries, describe their strengths and limitations, and discuss the potential future role of PCa registries in outcomes research. Evidence acquisition: We performed a literature review of the Medline, Embase, and Web of Science databases. The search strategy included the terms prostate cancer, outcomes, statistical approaches, population-based cohorts, registries of outcomes, and epidemiological studies, alone or in combination. We limited our search to studies published between January 2005 and January 2015. Evidence synthesis: Several population-based and prospective disease-specific registries are currently available for prostate cancer. Studies performed using these data sources provide important information on incidence and mortality, disease characteristics at presentation, risk factors, trends in utilization of health care services, disparities in access to treatment, quality of care, long-term oncologic and health-related quality of life outcomes, and costs associated with management of the disease. Although data from these registries have some limitations, statistical methods are available that can address certain biases and increase the internal and external validity of such analyses. In the future, improvements in data quality, collection of tissue samples, and the availability of data feedback to health care providers will increase the relevance of studies built on population-based and disease-specific registries. Conclusions: The strengths and limitations of PCa registries should be carefully considered when planning studies using these databases. Although randomized controlled trials still provide the highest level of evidence, large registries play an important and growing role in advancing PCa research and care. Patient summary: Several population-based and prospective disease-specific registries for prostate cancer are currently available. Analyses of data from these registries yield information that is clinically relevant for the management of patients with prostate cancer.

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“…ICHOM recognized that recommending a single instrument for comprehensive evaluation of side effects was a contentious decision, because centers of excellence already had well-established prospective programs including different patient-reported outcomes and there was no convincing indication for the superiority of one tool over another (45). However, the Consortium strongly recommended the regular use of such patient-reported instruments, from baseline up to 10-year follow-up, as part of high-quality care pathways.…”

Section: Is the Patient's Point Of View Of Interest? Challenges In Mementioning

confidence: 99%

Understanding Urinary Toxicity after Radiotherapy for Prostate Cancer: First Steps Forward

Rancati

Palorini

Cozzarini

et al. 2017

Tumori

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Tumori 2017; 103(5): [395][396][397][398][399][400][401][402][403][404] REVIEW -BONADONNA LECTURE SERIES may be differently related to the absorbed dose. For example, rectal bleeding arises as a serial effect and is mainly related to the absorption of high doses in small rectal mucosa volumes, whilst fecal incontinence is related to intermediate doses absorbed by large rectal volumes.The development of reliable models of radiation-induced toxicities along with the available level of technology has determined an efficient improvement of the treatment plans, even in dose-escalated or hypofractionated regimens. This is particularly true for moderate and severe rectal toxicities, which had an incidence close to 20% in the 1990s while in the most recent publications they have fallen below 7%-10%.However, an analogous result has not yet been reached in urinary symptoms. This is mainly due to the difficulty in sparing the bladder, which is partially but unavoidably included in the target volume, as well as to the clear lack of knowledge concerning the predictors of urinary toxicity. The main reason for this deficiency is probably the difficulty in following for a sufficiently long time a large number of patients whose clinical and dosimetry data need to be individually and prospectively collected with proper evaluation of urinary symptoms. Some important symptoms (e.g., incontinence) may indeed continuously arise after radiation therapy and their incidence reaches a plateau only many years (typically 5-8) after treatment. The fulfilment of reliable models of radiation-induced urinary sequelae is therefore made particularly challenging by the complexity of symptoms, their evolution over time, and the strong dependence on the baseline situation.It is widely acknowledged that radiation-induced toxicity is a multifactorial problem, depending not only on the delivered

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Defining a Standard Set of Patient-centered Outcomes for Men with Localized Prostate Cancer

Cited by 209 publications

References 26 publications

Improving the relevance and consistency of outcomes in comparative effectiveness research

Improving the relevance and consistency of outcomes in comparative effectiveness research

Prostate Cancer Registries: Current Status and Future Directions

Understanding Urinary Toxicity after Radiotherapy for Prostate Cancer: First Steps Forward

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