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Perlmutter J.,Gemini Group | Roach N.,Fight Colorectal Cancer | Smith M.L.,Research Advocacy Network
Seminars in Oncology | Year: 2015

Advocates can play an important role in cancer research. In 2010, the National Cancer Institute (NCI) Advocate in Research Working Group (ARWG) defined a “research advocate” as an individual who brings and can convey a nonscientific viewpoint to the research process and can communicate a collective patient perspective through knowledge of multiple disease experiences. Experiences cited in this review are related to publically funded research. They, exemplify challenges and successes of advocate engagement and involvement in the cancer research process. © 2015 Elsevier Inc.


Hershman D.L.,Columbia University | Lacchetti C.,American Society of Clinical Oncology | Dworkin R.H.,University of Rochester | Lavoie Smith E.M.,University of Michigan | And 12 more authors.
Journal of Clinical Oncology | Year: 2014

Purpose: To provide evidence-based guidance on the optimum prevention and treatment approaches in the management of chemotherapy-induced peripheral neuropathies (CIPN) in adult cancer survivors. Methods: A systematic literature search identified relevant, randomized controlled trials (RCTs) for the treatment of CIPN. Primary outcomes included incidence and severity of neuropathy as measured by neurophysiologic changes, patient-reported outcomes, and quality of life. Results: A total of 48 RCTs met eligibility criteria and comprise the evidentiary basis for the recommendations. Trials tended to be small and heterogeneous, many with insufficient sample sizes to detect clinically important differences in outcomes. Primary outcomes varied across the trials, and in most cases, studies were not directly comparable because of different outcomes, measurements, and instruments used at different time points. The strength of the recommendations is based on the quality, amount, and consistency of the evidence and the balance between benefits and harms. Recommendations: On the basis of the paucity of high-quality, consistent evidence, there are no agents recommended for the prevention of CIPN. With regard to the treatment of existing CIPN, the best available data support a moderate recommendation for treatment with duloxetine. Although the CIPN trials are inconclusive regarding tricyclic antidepressants (such as nortriptyline), gabapentin, and a compounded topical gel containing baclofen, amitriptyline HCL, and ketamine, these agents may be offered on the basis of data supporting their utility in other neuropathic pain conditions given the limited other CIPN treatment options. Further research on these agents is warranted. © 2014 by American Society of Clinical Oncology.


Basch E.,University of North Carolina at Chapel Hill | Spertus J.,University of Missouri - Kansas City | Adams Dudley R.,University of California at San Francisco | Chuahan C.,Mayo Medical School | And 6 more authors.
Value in Health | Year: 2015

Abstract Objective To recommend methods for assessing quality of care via patient-reported outcome-based performance measures (PRO-PMs) of symptoms, functional status, and quality of life. Methods A Technical Expert Panel was assembled by the American Medical Association-convened Physician Consortium for Performance Improvement. An environmental scan and structured literature review were conducted to identify quality programs that integrate PRO-PMs. Key methodological considerations in the design, implementation, and analysis of these PRO-PM data were systematically identified. Recommended methods for addressing each identified consideration were developed on the basis of published patient-reported outcome (PRO) standards and refined through public comment. Literature review focused on programs using PROs to assess performance and on PRO guidance documents. Results Thirteen PRO programs and 10 guidance documents were identified. Nine best practices were developed, including the following: provide a rationale for measuring the outcome and for using a PRO-PM; describe the context of use; select a measure that is meaningful to patients with adequate psychometric properties; provide evidence of the measure's sensitivity to differences in care; address missing data and risk adjustment; and provide a framework for implementation, interpretation, dissemination, and continuous refinement. Conclusion Methods for integrating PROs into performance measurement are available. © 2015 International Society for Pharmacoeconomics and Outcomes Research (ISPOR).


PubMed | Research Advocacy Network, Parkinson Pipeline Project, University of Missouri - Kansas City, American Medical Association and 4 more.
Type: Journal Article | Journal: Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research | Year: 2015

To recommend methods for assessing quality of care via patient-reported outcome-based performance measures (PRO-PMs) of symptoms, functional status, and quality of life.A Technical Expert Panel was assembled by the American Medical Association-convened Physician Consortium for Performance Improvement. An environmental scan and structured literature review were conducted to identify quality programs that integrate PRO-PMs. Key methodological considerations in the design, implementation, and analysis of these PRO-PM data were systematically identified. Recommended methods for addressing each identified consideration were developed on the basis of published patient-reported outcome (PRO) standards and refined through public comment. Literature review focused on programs using PROs to assess performance and on PRO guidance documents.Thirteen PRO programs and 10 guidance documents were identified. Nine best practices were developed, including the following: provide a rationale for measuring the outcome and for using a PRO-PM; describe the context of use; select a measure that is meaningful to patients with adequate psychometric properties; provide evidence of the measures sensitivity to differences in care; address missing data and risk adjustment; and provide a framework for implementation, interpretation, dissemination, and continuous refinement.Methods for integrating PROs into performance measurement are available.


Theriault R.L.,University of Texas M. D. Anderson Cancer Center | Carlson R.W.,Stanford University | Allred C.,University of Washington | Anderson B.O.,University of Washington | And 26 more authors.
JNCCN Journal of the National Comprehensive Cancer Network | Year: 2013

These NCCN Guidelines Insights highlight the important updates specific to the management of HER2-positive metastatic breast cancer in the 2013 version of the NCCN Clinical Practice Guidelines in Oncology for Breast Cancer. These include new first-line and subsequent therapy options for patients with HER2-positive metastatic breast cancer. Copyright © 2013 by the National Comprehensive Cancer Network. All rights reserved.


Gradishar W.J.,Northwestern University | Anderson B.O.,University of Washington | Blair S.L.,University of California at San Diego | Burstein H.J.,Womens Cancer Center | And 25 more authors.
JNCCN Journal of the National Comprehensive Cancer Network | Year: 2014

Breast cancer is the most common malignancy in women in the United States and is second only to lung cancer as a cause of cancer death. The overall management of breast cancer includes the treatment of local disease with surgery, radiation therapy, or both, and the treatment of systemic disease with cytotoxic chemotherapy, endocrine therapy, biologic therapy, or combinations of these. The NCCN Guidelines specific to management of large clinical stage II and III tumors are discussed in this article. These guidelines are the work of the members of the NCCN Breast Cancer Panel. Expert medical clinical judgment is required to apply these guidelines in the context of an individual patient to provide optimal care. Although not stated at every decision point of the guidelines, patient participation in prospective clinical trials is the preferred option of treatment for all stages of breast cancer. © National Comprehensive Cancer Network, Inc. 2014, All rights reserved.


Gradishar W.J.,Northwestern University | Anderson B.O.,University of Washington | Balassanian R.,University of California at San Francisco | Blair S.L.,University of California at San Diego | And 25 more authors.
JNCCN Journal of the National Comprehensive Cancer Network | Year: 2015

Breast cancer is the most common malignancy in women in the United States and is second only to lung cancer as a cause of cancer death. The overall management of breast cancer includes the treatment of local disease with surgery, radiation therapy, or both, and the treatment of systemic disease with cytotoxic chemotherapy, endocrine therapy, biologic therapy, or combinations of these. This portion of the NCCN Guidelines discusses recommendations specific to the locoregional management of clinical stage I, II, and IIIA (T3N1M0) tumors. © JNCCN - Journal of the National Comprehensive Cancer Network.


Smith M.L.,Research Advocacy Network | White C.B.,CB White and Assoc. | Railey E.,Research Advocacy Network | Sledge Jr. G.W.,Indiana University Bloomington | Sledge Jr. G.W.,Stanford University
Breast Cancer Research and Treatment | Year: 2014

The purpose of the study was to examine variables that influence patients' decisions to undergo treatment for metastatic breast cancer as part of a larger effort to understand the utility of biomarkers in treatment decisions. An online survey containing treatment scenarios for a conjoint analysis was e-mailed to members of breast cancer support organizations. The survey contained 14 different scenarios in which survey respondents with a history of metastatic breast cancer were asked to choose between two treatments and whether or not they would undergo the treatment. The scenarios were designed based on paclitaxel and capecitabine profiles related to medication format, likelihood of benefit, and side effects. The likelihood of benefit and likelihood/severity of side effects associated with these two drugs were varied based on the range of predictability afforded by current biomarkers. Most of the 641 respondents indicated that they would opt to undergo a treatment with 27 or 33 % likelihood of benefit regardless of the toxicity scenario presented. In general, a high percentage of respondents indicated that they would choose treatment in all of the scenarios (e.g., for an intravenous medication with a 20-50 % likelihood of benefit and a 20-60 % likelihood of moderate peripheral neuropathy for 1 year, 65-94 % of respondents indicated that they would choose treatment). The conclusion is that this study found that likelihood of benefit was more important than toxicity when considering particular benefit and toxicity ranges associated with common treatment options for metastatic breast cancer. © 2014 Springer Science+Business Media New York.


Tevaarwerk A.J.,University of Wisconsin - Madison | Gray R.J.,Dana-Farber Cancer Institute | Schneider B.P.,Indiana University | Smith M.L.,Research Advocacy Network | And 6 more authors.
Cancer | Year: 2013

Background: Population-based studies have shown improved survival for patients diagnosed with metastatic breast cancer over time, presumably because of the availability of new and more effective therapies. The objective of the current study was to determine whether survival improved for patients who developed distant recurrence of breast cancer after receiving adjuvant therapy. METHODS: Adjuvant chemotherapy trials coordinated by the Eastern Cooperative Oncology Group that accrued patients between 1978 and 2002 were reviewed. Survival after distant disease recurrence was estimated for progressive time periods, and adjusted for baseline covariates in a Cox proportional hazards model. RESULTS: Of the 13,785 patients who received adjuvant chemotherapy in 11 trials, 3447 (25%) developed distant disease recurrence; the median survival after recurrence was 20 months (95% confidence interval, 19 months-21 months). Factors associated with inferior survival included a shorter distant recurrence-free interval (DRFI), estrogen receptor-negative and progesterone receptor-negative disease, the number of positive axillary lymph nodes present at the time of diagnosis, and black race (P <.0001 for all). When the time period of recurrence was added to the model, it was not found to be significantly associated with survival for the general population with disease recurrence. Survival improved over time only in those patients with hormone receptor-negative disease with a DRFI ≤ 3 years, both among the 5 most recent and the entire trial data sets (P =.01 and P =.05, respectively). CONCLUSIONS: In contrast to reports from population-based studies, no general improvement in survival was observed over the last 30 years for patients who developed distant disease recurrence after adjuvant chemotherapy after adjusting for DRFI. Improved survival for patients with hormone receptor-negative disease with a short DRFI suggests a benefit from trastuzumab. Cancer 2013. © 2012 American Cancer Society.

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