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J. Freeman-Daily

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    ORAL 27 - Care (ID 123)

    • Event: WCLC 2015
    • Type: Oral Session
    • Track: Advocacy
    • Presentations: 8
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      ORAL27.01 - Bridging the Quality Chasm in Lung Cancer Care: Stakeholder Perspectives on Multidisciplinary Care in a Community Hospital Setting (ID 848)

      10:45 - 10:56 AM  |  Author(s): S. Kedia, K.D. Ward, B. Jackson, F.E. Rugless, N. Faris, K.S. Roark, L. McHugh, O. Osborne, M. Sheean, C. Foust, R.U. Osarogiagbon

      • Abstract
      • Presentation
      • Slides

      Background:
      The prevailing patient care model for lung cancer involves serial referrals among multiple clinical specialists. This practice may cause delays in diagnosis and treatment, patient/caregiver confusion and anxiety, poor communication among physicians, and diminished opportunities for patients to receive evidence-based care. The multidisciplinary care model may rectify these problems with the serial model, and thereby improve the quality and outcomes of care. However, the value of the multidisciplinary care model has not been objectively established. We collected the perspectives of key stakeholders on the 2 models of care. We sought to: examine the perceived strengths and weaknesses of each model; uncover potential barriers to establishing an effective multidisciplinary care program; and establish meaningful benchmarks with which to measure care delivery in both models. This work preceded a prospective comparative effectiveness study of the 2 models of care.

      Methods:
      We conducted 21 focus groups, involving 106 subjects (22 patients, 24 caregivers, 9 nurses, 8 hospital administrators, 4 executives of health insurance companies, and 39 physicians). The physicians included groups of medical and radiation oncologists, hospitalists, pulmonologists, thoracic surgeons, and primary care physicians. Patients had received care for a confirmed or suspected lung cancer in the Baptist Memorial Health Care System within the preceding 6 months. Disease stage ranged from early, with curative-intent treatment, to advanced-stage with palliative-intent care. Providers may or may not have had personal experience of the multidisciplinary model. We used verbatim transcripts of the audio recordings and field notes to analyze the content of each focus group session using Dedoose Software. We identified recurring themes and variants within and across the various stakeholder groups.

      Results:
      Several overlapping themes emerged. There was a perception that the multidisciplinary care improved physician collaboration, care coordination, accuracy of diagnosis, concordance with treatment recommendations, timeliness of care, efficiency of care-delivery, and patient satisfaction. Potential obstacles to successful implementation of the multidisciplinary care model included problems with physician reimbursement, the duration of the patient-physician interaction, and acceptability/integration of the model within the current health care infrastructure. These concerns were especially prevalent among physicians. Overcoming these barriers would require physician and patient education, efficient use of electronic medical records, and improving general awareness about the multidisciplinary care model. Identified evaluative benchmarks included measures of patient/caregiver experience and satisfaction, survival rates, timeliness of care, the quality of patient-physician communication, consistency of recommendations among physicians, and the adequacy of consultation times.

      Conclusion:
      The stakeholders in lung cancer care had broadly overlapping beliefs about optimal care delivery for lung cancer. However, they also had different expectations, and motivations. These competing factors have the potential to influence perceptions about the quality, efficiency, and effectiveness of lung cancer care delivery. Patients, caregivers, clinicians, administrators, and third-party payers were in favor of the multidisciplinary model for lung cancer care. However, key barriers must be addressed for optimal implementation. Meaningful stakeholder input is essential to improving the quality of lung cancer care.

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      ORAL27.02 - Patients' Attitudes and Physicians' Perceptions Toward Maintenance Therapy for Advanced NSCLC: A Multicenter Italian Survey (ID 1448)

      10:56 - 11:07 AM  |  Author(s): M.V. Pacchiana, E. Capelletto, A. Rossi, D. Galetta, P. Bordi, A. Ceribelli, V. Scotti, D. Cortinovis, G. Valmadre, O. Martelli, A. Miccianza, A. Del Conte, R. Morena, F. Rosetti, L. Ostacoli, S. Novello

      • Abstract
      • Presentation
      • Slides

      Background:
      Pemetrexed maintenance therapy (MT) after induction with platinum-based chemotherapy plus pemetrexed has recently become a concrete strategy of treatment for advanced non-squamous NSCLC patients, by extending survival, delaying disease progression, and maintaining quality of life. However, the benefit of the MT has to be weighed against the potential burden of a long-term treatment, and thus patients’ perception and preferences should be taken into account in the definition of the strategy of treatment.

      Methods:
      After conducting a focus group with 8 physicians dealing with NSCLC and concerning their opinions about the MT from a clinical and emotional point of view, a 12 questions-anonymous survey has been carried out in 13 Italian Oncologic Institutions and supported by WALCE (Women Against Lung Cancer in Europe), with the aim to evaluate patients' attitude toward the MT, the benefit they expected and to provide data about physicians awareness about patients’ inclinations. The Distress Thermometer Questionnaire has also been employed to perform a bio-psycho-social-spiritual assessment of the evaluated patients. Patients' evaluations have been performed at the beginning of chemotherapy (T0) and at the beginning of MT (T1), while physicians fill the survey only once during the study.

      Results:
      The survey has been prospectively (1st of December 2014-28th of February-2015) administered to 92 newly diagnosed advanced non-squamous NSCLC patients (58,7% male, median age 63,9 years), EGFR wilde-type, consecutively enrolled and suitable for first-line platinum/pemetrexed-based chemotherapy, and to 37 referring physicians (equally distributed per gender, with median age 41 years). To date, after platinum-based induction chemotherapy (median number of cycles 3,3, equally distributed between cisplatin and carboplatin), 24 of 92 patients enrolled (26,1%) have already started the pemetrexed MT. Main results are shown in Table 1. Most of the patients (73,9%) are in favor of MT. Until life expectation is over 3 months, data show agreement between patients' and physicians' perceptions of patients. When OS benefit drops at 1 month the two perceptions split: a lower percentage of patients (44,5%) would perform MT. By contrast, even without OS benefit, 71,3% of patients accept MT if it can increase symptom control. Figure 1



      Conclusion:
      Study is ongoing and data about T1 evaluations are still immature. Our preliminary data suggest the importance, when MT communication is done by the referral physician, to stress more symptoms control rather than survival rates.

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      ORAL27.03 - Patient Advocates in the Lung Cancer Diagnostic Pathway: A Qualitative Study of Interviews with Lung Cancer Patients and Their Caregivers (ID 225)

      11:07 - 11:18 AM  |  Author(s): S. York, N.M. Rankin, M. Lai, P. Butow, D. McGregor, D. Barnes, R. Zielinski, E. Stone, T. Shaw

      • Abstract
      • Presentation
      • Slides

      Background:
      Despite lung cancer being the leading cause of cancer death in developed countries, there is surprisingly little qualitative research that documents lung cancer patients’ diagnostic pathway and beyond. Recent evidence from the UK highlighted that people diagnosed with the disease will have had three or more consultations with their family physician (general practitioner, GP) before referral to a lung cancer specialist. This study aimed to document the diagnostic pathway from the patient perspective through qualitative interviews and process mapping. The study is one component of a lung cancer implementation research program in the Australian setting.

      Methods:
      We developed a qualitative interview schedule to conduct with patients and their caregivers. We recruited participants via treating clinician (respiratory physician/pulmonologist or medical oncologist) by sending a personal invitation letter. All patients were at least six months post-diagnosis at the time of first invitation and we obtained human ethics committee approvals. Interviews were conducted by telephone or face-to-face, according to the participant’s preference. All interviews were recorded, transcribed and coded using a coding framework developed by four members of the investigator team (SY, NR, ML, PB). The transcripts were coded in NVIVO 10 software. We interpreted the transcripts with two specific purposes in mind: first, to draw detailed maps of their journey, documenting the key points about which participants spoke about. Secondly, we conducted a content analysis and developed qualitative themes to understand and interpret patient journeys.

      Results:
      Twenty lung cancer patients participated in the qualitative interviews. Interviews took about one hour to complete. The patient journey maps provided rich data to understand the complexity of pathways that patients experience in the lead up to their lung cancer diagnosis, their subsequent treatment through to survivorship or palliation phase. A number of patients recalled very precise information about their journey and had recorded diary entries of key dates or times in their diagnostic pathway. We examined all the maps to identify common elements in the pathways. We used the qualitative material to understand how patient care was coordinated across the journey and will report on specific themes. In particular, we will highlight the theme of advocacy. It was evident that hospital-based clinicians were frequently perceived as the coordinator of their patient’s care. We will discuss their role in advocating for urgent patient diagnostic investigations when these were necessary. These clinicians were frequently perceived by patients as their advocates beyond diagnosis, as were GPs where the patient had an established relationship with this physician. We will also address the themes of patient anxiety and self-advocacy, and provide specific examples of how patients self-managed their care.

      Conclusion:
      The patient journey through lung cancer diagnosis is complex and qualitative interviews provide a rich source of information to better understand how clinicians and family physicians advocate for patients, and how some patients self-advocate in their care. The resulting patient maps and qualitative material will inform lung cancer implementation research projects to address the diagnostic pathway and improving patient care.

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      ORAL27.04 - Discussant for ORAL27.01, ORAL27.02, ORAL27.03 (ID 3364)

      11:18 - 11:28 AM  |  Author(s): G. Walia

      • Abstract
      • Presentation

      Abstract not provided

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      ORAL27.05 - "Care for Outcome" in Lung Cancer: A Santeon's Value Based Health Care Project (ID 165)

      11:28 - 11:39 AM  |  Author(s): C.M. van Loenhout, W.F. Van Den Bosch, B. Van Den Borne, F. Schramel, J. Herder

      • Abstract
      • Presentation
      • Slides

      Background:
      In health care several indicators are developed for measuring the quality of care. Many of these indicators address the process and structure of health care, rather than the outcome of treatment and aspects which are valuable for patients. Porter (N Engl J Med 2010 363;26) described a method concentrating on achieving high value for patients by identifying and prioritizing outcome measurements. In the project “Care for Outcome” of Santeon (a cooperation of six leading, top clinical hospitals in the Netherlands) we identified outcome indicators in lung cancer which are relevant for the patient and focus on treatment outcome, like survival and quality of life.

      Methods:
      The project was performed in two large, non-university teaching hospitals in the Netherlands. Our objective was to develop outcome indicators which are relevant for both patients and physicians. We evaluated patients with all stages and types of lung cancer. Using a “Care delivery value chain” (CDVC) scheme as developed by Porter, we identified determinants which are important for patients. Quality of life was evaluated by Patient Reported Outcome Measures (PROMs) at different times. Around 80 outcome indicators were found by literature research. These were classified by using the Outcome Measure Hierarchy and prioritized based on: impact on patient, influence of CDVC and statistical power. A first selection of 25 outcome indicators were then evaluated by an International Academic Council on lung cancer, a Methodological Advisory Council and representatives of the government, health insurance companies and patient federations. A final set of six indicators was selected based on quality of definition and feasibility of collection. A set of appropriate patient initial conditions was identified to be used for casemix correction.

      Results:
      The indicators which were formed in the “Care for Outcome” project were divided in three categories. The first category was survival: 1 and 2 year mortality after diagnosis, mortality 90 days after resection and 5-year survival using Kaplan-Meier curves and Cox-survival curves. The second category was recovery: the percentage of patients with positive resection margins and quality of life after 0, 3, 6, 12 months were evaluated. The third category concerned complications and adverse events: the percentage of patients with rethoracotomy, complications after resection and toxicity after (chemo)radiation were retrospectively measured over the years 2008-2011. Multivariate regression analysis showed that, in order of impact, tumor stage, performance status and age were the strongest predictors of outcome. Next to those, comorbidity (Charlson score) and pulmonary functioning (%FEV1 and %DLCO as a proxy of smoking history) were also relevant.

      Conclusion:
      In the “Care for Outcome” project we systematically developed a compact set of outcome indicators for patients with lung cancer focusing on the value of treatment for these patients. We started a retrospective data analysis, looking back four years, using these outcome indicators. These reports help us to better understand our quality of care and to improve our processes. In the near future these indicators will be collected prospectively and are feasible to be used to compare different treatment modalities and hospitals across the country.

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      ORAL27.06 - Disparities in Lung Cancer Incidence and Management Care in France: A Nationwide Cohort Study (the TERRITOIRE Study) (ID 1177)

      11:39 - 11:50 AM  |  Author(s): C. Chouaid, D. Debieuvre, I. Durand-Zaleski, J. Fernandes, A. Scherpereel, V. Westeel, C. Blein, A. Gaudin, N. Ozan, B. Saitta, A. Vainchtock, F. Cotté, P.J. Souquet

      • Abstract
      • Presentation
      • Slides

      Background:
      Reducing health inequalities in oncology is a major public health priority in France, particularly in terms of social and geographic exclusion and equity of access to health care services. However, no specific registry currently exists for patients with lung cancer allowing description and comparison of local situations. Our aim was to use available National medico-administrative databases to constitute a nationwide population-based cohort study to analyze disparities among French areas (the TERRITOIRE study).

      Methods:
      We included all patients who had a first diagnosis of lung cancer between January 1rst and December 31th 2011 in the National hospitals databases (PMSI, Programme de Médicalisation des Systèmes d'Information). Patients’ data were linked to create a retrospective cohort study with a two-year follow-up period. The 22 administrative regions were considered in this analysis. In addition of demographic characteristics, metastatic status, comorbidities and treatment procedures, we assigned each patient to socioeconomic deprivation and urbanization scores based on their postcode of residence.

      Results:
      We identified 41,715 patients newly diagnosed for lung cancer. Mean age at diagnosis was 66.4(±11.9) years and most of patients were men (71.8%). Patients from socioeconomic deprived areas represented 27.5% of the whole lung cancer population, ranging from 9.6% to 55.2% according to the region. Incidences of lung cancer were 35.1 per 100,000 in women and 95.3 per 100,000 in men. Age-standardized incidences showed important disparities between French regions ranging from 27.5 to 55.0 and from 82.4 to 118.2 per 100,000 in women and men, respectively. Higher incidences were found in the northern and eastern regions for men and in the southern and eastern regions for women. Although patients living in rural areas were the larger group (34.5%), Age-standardized incidence significantly increased with urbanization: from 61.8 per 100.000 in rural areas to 73.9 per 100.000 in urban areas. A majority of patients was diagnosed at a metastatic stage (52.7%) and regional disparities were important ranging from 45.0% to 58.1%. This rate also appeared higher in patients diagnosed in public hospitals compared to private ones (56.1% vs 42.9%, p<0.0001) and in local hospitals compared to university ones (60.2% vs 49.6%, p<0.0001). Adjusted comparisons showed significantly higher incidences of stage IV patients at the time of diagnosis in five regions for men and two regions for women. A majority of patients (N=23,842; 57.2%) died in the hospital during the 2-year follow-up, including 15,642 patients (71.2%) having metastasis at the time diagnosis.

      Conclusion:
      We have demonstrated that a comprehensive population-based cohort using medico-administrative data is a suitable approach to illustrate disparities in lung cancer incidence, management care and outcomes in France. Data from this study should help local clinical teams and health stakeholders to better understand inequality issues in their areas.

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      ORAL27.07 - Impact of Regulatory Delays in Approving Oncology Drugs in a Developing Country: Mortality Associated with Lack of Access to Crizotinib in Brazil (ID 2295)

      11:50 - 12:01 PM  |  Author(s): P.M. Barrios, M. Debiasi, G. Lopes, C. Barrios

      • Abstract
      • Presentation
      • Slides

      Background:
      Strict legislation and regulatory standards for the approval of drugs represent a safety guarantee for the population of any country. However, inappropriate delays in the process of evaluation of new medications have potentially serious consequences that can be measured. The objective of this analysis is to estimate the impact of the delay in the registration of medicines by the Brazilian regulatory agency, ANVISA, on the life span and life with symptoms related to the disease of patients who might potentially benefit from treatment. We use the example of crizotinib (Xalcori® Pfizer, NY, USA), which had its registration refused by the agency in 2014.

      Methods:
      We arbitrarily selected the 3-year period from August 2011 (FDA approval) to June 2014 (refusal by ANVISA) for this analysis. The number and prevalence of NSCLC cases eligible for treatment were estimated according to data from the Brazilian National Cancer Institue (INCA). The percentage of patients with ALK-positive tumors was inferred from the literature. We assumed that every ALK-positive NSCLC patient in Brazil would have access to the drug regardless if seeking treatment through the private or public health systems. The benefits from treatment with crizotinib were considered according to the published literature available at the time of regulatory assessment.

      Results:
      We estimated 24.460 new cases of NSCLC/year in Brazil (INCA), 70,6% (17.269) of which are diagnosed as advanced disease. Approximately 4,3% (743) would qualify as ALK positive. In a phase III crossover trial, crizotinib treatment ensued an improved PFS (3.0 vs. 7.7 mo; HR 0.49, p<0.001) and a significant extension in the median time to deterioration of symptoms (1.4 vs. 5.6 mo; p<0.001) when compared to standard second line chemotherapy. Survival estimates were obtained from a retrospective analysis (Shaw et al. Lancet 2011) as follows: chemotherapy 6.0 vs. crizotinib 20.3 months. We estimated 707 prevalent cases of ALK+ NSCLC in Brazil at the start of our analysis and 62 new cases per month during the 3-year analysis period were projected. Applying the premises above we calculated 1.367 years of life lost, and 772 additional patients who would remain alive after the selected period between August 2011 and July 2014. Furthermore, a total of 846 years of life free of symptoms’ deterioration are lost with the associated human suffering during the same period of time.

      Conclusion:
      The delay in the analysis, approval and registration process of new medications in Brazil and other developing or developed countries has an important impact in terms of human lives that can be potentially measured or estimated. While this kind of scrutiny has clear methodological limitations to consider, our main objective in this analysis is to raise the issue of the urgent need for a detailed and transparent evaluation of all the steps involved in the evaluation and registration process to stall this unnecessary suffering and loss of human life.

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      ORAL27.08 - Discussant for ORAL27.05, ORAL27.06, ORAL27.07 (ID 3564)

      12:01 - 12:11 PM  |  Author(s): J. Baranski

      • Abstract
      • Presentation

      Abstract not provided

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Author of

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    MS 27 - Advocacy in Practice (ID 45)

    • Event: WCLC 2015
    • Type: Mini Symposium
    • Track: Advocacy
    • Presentations: 1
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      MS27.05 - Supporting Lung Cancer Survivors – Living with and Beyond Lung Cancer (ID 1972)

      03:05 - 03:35 PM  |  Author(s): J. Freeman-Daily

      • Abstract
      • Presentation

      Abstract:
      When I heard the words "lung cancer" at age 55, I could barely believe the diagnosis. The facts I found online were not encouraging. As we moved through the various staging procedures, my family and I experienced increasing levels of fear. Within sixteen months I had two chemo regimens, two radiation protocols, and two progressions. Fortunately, my online patient community informed me about mutation testing and the new ROS1 translocation. My tumor tissue tested positive for ROS1, and I started taking crizotinib in a clinical trial in November 2012. I’ve had No Evidence of Disease for 30 months and counting. More new treatments have become available for lung cancer patients in the past four years than in the past four decades. Precision medicine, clinical trials, reliable online information sources, supportive online patient and caregiver communities, and care teams that engage in shared decision making have enabled me and many other metastatic lung cancer patients to beat the odds and live with metastatic lung cancer as a chronic illness instead of a death sentence. No therapy offers a permanent cure. We live from scan to scan. Yet we’re happy to be alive and have a relatively normal life for as long as it lasts. What are the keys to living with and beyond lung cancer? To live successfully with lung cancer, patients need access to appropriate and affordable treatment from compassionate, capable healthcare providers. We need those healthcare providers to stay current with treatment guidelines and use precision medicine best practices such as genomic sequencing to find effective treatments for our individual cancers. But we metastatic patients – who make up a majority of lung cancer patients -- need more than this. We need consultations with experts who have knowledge about our individual types of lung cancer. We need help accessing second opinions and clinical trials. We need plans for the next steps in case treatments aren’t effective. We need access to support services that improve our quality of life. Connecting stage IV patients to palliative care services early in the diagnosis and treatment process improves quality of life, gives us resources for dealing with treatment side effects and pain, and develops relationships which can help us and our family members consider our goals in pursuing further treatment. We need psychosocial supports for ourselves and loved ones to cope with depression and facilitate important conversations on difficult topics. After successful curative treatments, we need survivorship plans, and possibly rehab to deal with side effects. In addition to treatments, we need help to break through the shock of diagnosis, to become activated and engaged patients who participate in our own care--engaged patients tend to have better outcomes. We need people to dispel the stigma associated with lung cancer and treat us with respect and compassion regardless of our smoking history. After cancer forces us to realize how little control we truly have in life, we need to regain some sense of control. Choosing treatment options using a shared decision making process with our healthcare providers ensures our priorities and values are considered, and helps us understand the risks and benefits of each option. Connected health resources can help more lung cancer patients become engaged and participate in shared decision making. Trusted websites hosted by the NCI, cancer centers, medical societies, and advocacy organizations help inform us about our disease and our options. Patient success stories on personal blogs and social media offer us hope. Talking with other patients and caregivers who are sharing the same experiences lifts our spirits and helps us deal with side effects and losses. When both patients and healthcare providers embrace molecular and genomic testing, clinical trials as treatment options, online resources, connected patient and caregiver communities, and shared decision making, more lung cancer patients will successfully live with and through lung cancer. Barry MJ, Edgman-Levitan S. Shared Decision Making — The Pinnacle of Patient-Centered Care. N Engl J Med 2012; 366:780-781. DOI: 10.1056/NEJMp1109283. http://www.nejm.org/doi/full/10.1056/NEJMp1109283 accessed 7/2/2105. Cataldo JK, Brodsky JL. “Lung cancer stigma, anxiety, depression and symptom severity.” Oncology. 2013;85(1):33-40. doi: 10.1159/000350834. Epub 2013 Jun 29. http://www.ncbi.nlm.nih.gov/pubmed/23816853 accessed 7/1/2013. Glattki GP, Manika K, Sichletidis L, Alexe G, Brenke R, Spyratos D. Pulmonary rehabilitation in non-small cell lung cancer patients after completion of treatment. Am J Clin Oncol. 2012 Apr;35(2):120-5. doi: 10.1097/COC.0b013e318209ced7. http://www.ncbi.nlm.nih.gov/pubmed/21378541 accessed 7-1-2015. Health Policy Brief: Patient Engagement. Health Affairs. February 14, 2013. Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler NE, Page AEK, editors. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington (DC): National Academies Press (US); 2008. 1, The Psychosocial Needs of Cancer Patients. Available from: http://www.ncbi.nlm.nih.gov/books/NBK4011/ Jean-Pierre P, Johnson-Greene D, Burish TG. Neuropsychological care and rehabilitation of cancer patients with chemobrain: strategies for evaluation and intervention development.. Support Care Cancer. 2014 Aug;22(8):2251-60. doi: 10.1007/s00520-014-2162-y. Epub 2014 Mar 27. http://www.ncbi.nlm.nih.gov/pubmed/24671433 accessed 7/1/2015. Kvedar J, Coye MJ, Everett W. “Health Policy Brief: Connected Health: A Review Of Technologies And Strategies To Improve Patient Care With Telemedicine And Telehealth." Health Affairs. February 2014. Temel JS, Greer JA, Muzikansky A, Gallagher ER, et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. N Engl J Med 2010; 363:733-742 DOI: 10.1056/NEJMoa1000678. http://www.nejm.org/doi/full/10.1056/nejmoa1000678 accessed 7/1/2015. Wheler, J, Yelensky R, Stephen B, Hong D, et al. Prospective study comparing outcomes in patients with advanced malignancies on molecular alteration-matched versus non-matched therapy. Poster session presented at: ASCO 2015. 2015 Annual Meeting of the American Society of Clinical Oncology; 2015 May 29-Jun 2; Chicago, IL. http://meetinglibrary.asco.org/content/111990?media=vm&poster=1 accessed 7/1/2015.

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    PRC 01 - Press Conference 1 (ID 196)

    • Event: WCLC 2015
    • Type: Press Conference
    • Track: Other
    • Presentations: 1
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      PRC01.04 - Advocacy and Patient Advocates - Janet Freeman-Daily, Lung Cancer Patient & Advocate (ID 3617)

      11:55 - 12:05 PM  |  Author(s): J. Freeman-Daily

      • Abstract

      Abstract not provided