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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. Source

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. Source

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. Source

Smith M.L.,Research Advocacy Network
Journal of the American College of Radiology | Year: 2013

Breast density and breast density legislation are controversial and potentially emotional issues in breast screening. Informing individual patients of their breast density status is an extremely important and highly personal conversation that must focus on patients' specific situations. The unanswered questions about converting population risk make it difficult to provide an individual woman with an explanation of what breast density means to her individual risk for developing breast cancer now or in the future. There are no standards or guidelines for what doctors should tell patients about their risk with dense breasts, and legislating the conversation may not improve it or a woman's response to the information. It is necessary to learn more about breast density, understand its meaning, and communicate clearly and compassionately with patients about what we know and what we do not know about breast cancer risk. Precipitous legislation can, in fact, undermine both the patient-physician relationship and the need for more evidence that would expand our understanding of the risk associated with breast density. © 2013 American College of Radiology. Source

Basch E.,Sloan Kettering Cancer Center | Abernethy A.P.,Duke University | Mullins C.D.,University of Maryland College Park | Reeve B.B.,University of North Carolina at Chapel Hill | And 10 more authors.
Journal of Clinical Oncology | Year: 2012

Examining the patient's subjective experience in prospective clinical comparative effectiveness research (CER) of oncology treatments or process interventions is essential for informing decision making. Patient-reported outcome (PRO) measures are the standard tools for directly eliciting the patient experience. There are currently no widely accepted standards for developing or implementing PRO measures in CER. Recommendations for the design and implementation of PRO measures in CER were developed via a standardized process including multistakeholder interviews, a technical working group, and public comments. Key recommendations are to include assessment of patient-reported symptoms as well as health-related quality of life in all prospective clinical CER studies in adult oncology; to identify symptoms relevant to a particular study population and context based on literature review and/or qualitative and quantitative methods; to assure that PRO measures used are valid, reliable, and sensitive in a comparable population (measures particularly recommended include EORTC QLQ-C30, FACT, MDASI, PRO-CTCAE, and PROMIS); to collect PRO data electronically whenever possible; to employ methods that minimize missing patient reports and include a plan for analyzing and reporting missing PRO data; to report the proportion of responders and cumulative distribution of responses in addition to mean changes in scores; and to publish results of PRO analyses simultaneously with other clinical outcomes. Twelve core symptoms are recommended for consideration in studies in advanced or metastatic cancers. Adherence to methodologic standards for the selection, implementation, and analysis/reporting of PRO measures will lead to an understanding of the patient experience that informs better decisions by patients, providers, regulators, and payers. © 2012 by American Society of Clinical Oncology. Source

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