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B.J. Addario
Moderator of
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PA01 - Lung Cancer Diagnosis and Care: Identifying and Improving Community Standards (ID 356)
- Event: WCLC 2016
- Type: Patient & Advocacy Session
- Track: Patient Support and Advocacy Groups
- Presentations: 5
- Moderators:B.J. Addario, B. Bajec
- Coordinates: 12/05/2016, 11:00 - 12:30, Schubert 6
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PA01.01 - The Importance of Patient Access to Molecular Testing and Novel Therapies (ID 6744)
11:00 - 11:20 | Author(s): J. Freeman-Daily
- Abstract
- Presentation
Abstract:
Advances in lung cancer diagnosis and treatment are enabling many metastatic cancer patients to live months or years longer than ever before. Best practices in lung cancer detection, diagnosis, and treatment are changing so fast that keeping current with new developments is difficult for many healthcare providers-- more new drugs have been approved for lung cancer in the past five years than in the previous five decades. While testing for useful biomarkers such as EGFR, ALK and ROS1 is becoming more common, such tests are not yet standard procedure in many settings. Some patients who have limited tissue or who are interested in pursuing clinical trials might benefit from liquid biopsies or next generation sequencing (NGS) panels, but such tests might not available to them for a variety of reasons: the healthcare provider may be unfamiliar with the test or unconvinced of its merits, the facility may not have the technology or expertise to conduct the testing, or insurance may not cover the test. Even if the testing finds an actionable biomarker, patients may have difficulty obtaining novel therapies if those therapies are not approved or covered by insurance, or they may have trouble identifying and accessing appropriate clinical trials. Some biomarkers, such as PD-L1, are also less ‘definitive’ or standardized than others. This presentation discusses ways that patient access to molecular testing and novel therapies can not only improve lung cancer outcomes, but also help engage patients as partners in their own care and accelerate research through patient-driven data sharing.
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PA01.02 - The Route to Diagnosis: Impacting Survival by Changing the System (ID 6745)
11:20 - 11:40 | Author(s): T. Newsom-Davis
- Abstract
- Presentation
Abstract:
A significant proportion of lung cancer patients are first diagnosed with their disease as part of an emergency presentation (EP) to acute medical services. EP includes patients attending the emergency department (ED), primary care referrals to acute services, and emergency admissions to secondary care. This route to diagnosis is more common in lung cancer than other malignancies[1]. Initial studies focused on the United Kingdom, where 40% of lung cancer patients were found to present in this fashion[1], but it occurs in all European countries, with rates up to 52%[2]. Lung cancer patients presenting via EP tend to be older, have lower socio-economic status and greater social deprivation, display worse overall health, and have a lower performance status[3]. They are more likely to present with advanced stage disease~,~ and are less likely to have surgery or other treatments with curative intent[2]. The emergency route to diagnosis is associated with poorer patient experience and is a significant additional burden on acute medical services[4]. Most importantly, EP lung cancer patients have poorer survival[1]: the risk of dying in the first month post-diagnosis is four times higher for EP compared to non-EP patients[2]. For the majority of lung cancer patients, there are opportunities for earlier diagnosis and prevention of EP[5]. Most have a relatively long history of symptoms, often more than 12 weeks, and three-quarters have been to their general practitioner (GP) with their symptoms, usually on several occasions. There is also a group of patients who delay consulting a doctor, and they are more likely to report barriers to presenting to healthcare services[5]. Novel methods of lung cancer diagnosis, focusing on symptom recognition, early involvement of primary care and prompt assessment in secondary care, have the potential to address this important problem. In the UK, the issue of late diagnosis and EP of cancer is increasingly recognised in cancer strategies. A number of innovative approaches have been brought together by the ACE (Accelerate, Coordinate and Evaluate) program, which aims to improve early diagnosis of cancer across a range of tumour types by learning from current best-practice and trialling new projects, many of which focus on lung cancer[6]. These are now informing health policy. Prominent independent reports have also addressed the EP of lung cancer, and have produced a series of recommendations[7]. At a national level, campaigns to raise public awareness of the signs and symptoms of lung cancer can help promote earlier presentation to primary care, whilst the adoption of lung cancer screening programmes has the potential to reduce the number of lung cancer patients diagnosed late. Lung cancer risk assessment and clinical decision support tools can assist the GP. System-based tools use patients’ current symptoms to provide an indication as to who should be referred for further investigations, whilst lung cancer risk prediction models identify high risk individuals without symptoms for CT screening. These require further testing and validation, but if proven successful, should be available in primary care practices. Improving communication between primary and secondary care is critical. Direct telephone or email access between GPs and secondary care consultants would speed discussion about high risk cases. Meanwhile GPs should be able to make direct referrals for CT scans for patients with suspected lung cancer without the need for specialist authorization. Other innovative schemes have pioneered open-access patient self-referral for chest radiographs. The ED is often used as a safe and quick access point to secondary care, even for those patients who do not require emergency medical care. Developing new outpatient pathways can prevent EP by providing GPs with access to rapid-access clinics for patients with, for example, clinical suspicion of cancer but who are too unwell to wait 2 weeks for an urgent outpatient appointment, or those in whom the likely tumour type is not clear[6]. The Danish pathway for patients with serious but non-specific symptoms and signs of cancer is one of the pioneers in this area[8]. To support the patient through their whole journey and expedite the diagnostic process, a clinical nurse specialist (CNS) should be available to all patients undergoing investigations for suspected lung cancer. Those who present via EP should be seen within 24 hours by a CNS who then acts as their key worker. The patient should be registered on a timed, multi-disciplinary pathway, so that diagnosis is efficient and the patient is afforded the same treatment opportunities as those presenting via elective routes. Although there is not one solution to the problem of EP in lung cancer, and different approaches are needed for different health systems, there are common themes by which survival can be improved by changing the system for this vulnerable patient group. References: 1. Elliss-Brookes L, McPhail S, Ives A, et al. Routes to diagnosis for cancer - determining the patient journey using multiple routine data sets. British journal of cancer 2012;107(8):1220-6. doi: 10.1038/bjc.2012.408 2. Newsom-Davis T, Berardi R, Cassidy N, et al. Emergency diagnosis of lung cancer: an international problem. American Society of Clinical Oncology Annual Meeting. Chicago, 2015. 3. Mitchell ED, Pickwell-Smith B, Macleod U. Risk factors for emergency presentation with lung and colorectal cancers: a systematic review. BMJ Open 2015;5(4):e006965. doi: 10.1136/bmjopen-2014-006965 4. NHS England. High quality care for all, now and for future generations: Transforming urgent and emergency care services in England - Urgent and Emergency Care Review End of Phase 1 Report: NHS England Leeds, 2013. 5. Forbes L, Sarafraz-Shekary N, Kaushal A, Ramirez A-J, Hughes C, Newsom-Davis T.[. ]What explains diagnosis of lung or bowel cancer as an emergency? 10th NCRI Annual Conference; 2014; Liverpool. 6. Cancer Research UK: ACE Programme: Cancer Research UK; 2016 [Available from: http://www.cancerresearchuk.org/health-professional/early-diagnosisactivities/ace-programme accessed May 2016. 7. Expert Lung Cancer Working Group. Tackling emergency presentation of lung cancer: An expert working group report and recommendations. London: British Lung Foundation, 2015. 8. Ingeman ML, Christensen MB, Bro F, et al. The Danish cancer pathway for patients with serious non-specific symptoms and signs of cancer-a cross-sectional study of patient characteristics and cancer probability. BMC Cancer 2015;15:421. doi: 10.1186/s12885-015-1424-5
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PA01.03 - Establishing a Paradigm for High Quality Lung Cancer Treatment (ID 6746)
11:40 - 12:00 | Author(s): D. LeDuc
- Abstract
- Presentation
Abstract:
WCLC Extended Abstract: Establishing a Paradigm for High Quality Lung Cancer Treatment David LeDuc Due to the complexities of diagnosing and treating lung cancer, and the high mortality rate of the disease, lung cancer specialty care is more important than ever. Proper and timely diagnosis and development of a patient-specific treatment plan can impact patient outcome and quality of life with vulnerable populations, such as those who are uninsured or who live in rural and remote places, often not having access to the quality of care and multi-disciplinary approach to treatment found at leading academic institutions. This dynamic results in vulnerable populations being diagnosed in later stages, with limited treatment options and poorer outcomes than those patients with access to quality multi-disciplinary care. The Addario Lung Cancer Foundation (ALCF) Community Hospital Centers of Excellence Program (COE) directly addresses this need by partnering with community hospitals, where 80% of cancer patients are treated, to deliver standard of care lung cancer screening, diagnosis and treatment. The COE program currently includes 13 hospitals and serves thousands of patients each year in regions of high unmet need. The program aims to improve the standard of care, patient experience and patient outcome by offering patients and caregivers the same type of multi-disciplinary and comprehensive care provided at leading academic centers. ALCF also provides lung cancer education and services to patients, caregivers and the community. The COE program helps to bridge the health-equity disparity and lung cancer information gap by establishing a standard of care (SOC) to improve health outcomes and quality of life through an approach that is personalized, multi-disciplinary/-institutional, considers the totality of each individual’s cancer, and is coordinated by an onsite Patient Navigator (PN) cognizant of the unique medical, economic, emotional, and cultural needs of their unique population. The COE approach embodies a support and engagement strategy that targets the patient, caregiver, family, healthcare team, and community. The goals of the program are to: Improve outcomes, survival and quality of life for patients. Implementation of SOC best practices enable a comprehensive and fully integrated multidisciplinary team (MDT) of doctors (oncologist, pulmonologist, radiologist, pathologist, immuno-oncologist, etc.) that personalizes treatment based on each patient’s specific disease state. SOC includes: tumor board review; timely biopsy; molecular testing; consideration for targeted and immunotherapies and access to clinical trials. Successful implementation of COE standards of care helps to improve patient outcome and quality of life. Provide on-site Patient/Nurse Navigator (PN/NN) to manage each patient’s cancer journey. Navigators build a trusted relationship with patients, families/caregivers, and physicians to better ensure patient retention, engagement, and utilization of comprehensive specialty care and support services. Patient oversight includes guidance on molecular testing to identify unique genetic profile of the individual’s cancer to determine the best first-line treatment and develop a treatment strategy. The PN also provides support by connecting patients to all ALCF programs and helps address non-clinical challenges. The PN oversees MDT coordination, data tracking, patient surveys, and other monitoring tools to measure patient satisfaction, outcomes, and program success. Educate and empower patients/families/caregivers. Education empowers patients/caregivers to self-advocate and communicate with their physician team to ensure access to the full breadth of treatment and care options including access to new diagnostic technologies and tests, clinical trials, symptom management & palliative care among other resources. Patients and providers have access to ALCF’s free support programs: Patient Education Handbook, “Navigating Cancer 360° of Hope” (in English, Spanish, Chinese and hard copy, downloadable, mobile App); Patient Web Portal; and monthly Living Room Education/Support & Speaker Series available 24/7 Video Library (with Spanish and Chinese subtitles to ensure access to diverse populations). The COE program also provides patient educational materials and outreach to help promote the program in the local community and drive awareness. Track program progress & metrics through database tools. A key element of the program is the ability to collect and analyze COE data and provide COEs with access to de-identified patient/population data and reports and insights that drives interventions and improved patient outcomes. Participating COE hospitals provide metrics that demonstrate adherence to the COE SOC and to patient care and outcome. Metrics include: survival rates; quality of life as defined by NCCN guidelines; time from diagnosis to treatment; patient referrals to ALCF education/support services; and patient-specific data such as percentages with: an early diagnosis; who complete molecular testing; are referred to clinical trials; and reviewed by tumor board. Insights derived from this data help demonstrate progress toward patient survival, and delineate outcomes by care facility, geography, treatment approach, and ethnic group. Data is used to benchmark against other COE sites as well as compared to national data/statistics. ALCF conducts an annual review, sharing all findings with ALCF partners and community hospital COE sites. The COE model has already demonstrated proof of concept and positive impact on patient care and outcomes. Several sites are already reporting servicing patients at levels above community hospitals reported in the National Cancer Database. The COE data collection and analytics tools will enable ALCF to demonstrate impact on the screening, diagnosis, treatment and survival of lung cancer patients. Further, as the COE program adheres to SOC and produces data, it is anticipated that more patients will be diagnosed at earlier stages when survival rates are highest; more patients will receive molecular and genetic testing steering them towards targeted and immunotherapies that improve outcome; and clinical trial participation rates will go up.
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PA01.04 - Nurse-Led Lung Cancer Support Service (ID 6747)
12:00 - 12:15 | Author(s): C.L. Mulvihill
- Abstract
- Presentation
Abstract:
WCLC abstract December 2016 Title: The role of the Lung Cancer Nurse Service within the Lung Foundation Australia (LFA) Introduction: The presence of a Lung Cancer Nurse within a dedicated Lung Foundation is rare, nationally and internationally. In response to the need to improve national lung cancer services, Lung Foundation Australia (LFA) successfully secured funding through the Cancer Australia grant initiative “Supporting people with cancer”. LFA directed these funds toward addressing challenges identified by Cancer Australia within the lung cancer community through the appointment of a Lung Cancer Nurse to provide support and information across all stages of a lung cancer patient’s experience – not only at diagnosis, but also as a consistent point of contact throughout an extremely stressful and uncertain time. The service is intended to be an extension of existing health services, supporting both patient and carer throughout their journey. The role of the LFA Lung cancer nurse has evolved with the launch of the National Lung Multidisciplinary Team (MDT) directory in June 2016. This directory, currently representing 64 Lung MDTs, provides a detailed understanding of the services each hospital can provide for a patient, from diagnostics through to various treatment modalities. These two key initiatives - the Lung Cancer Nurse Service and National Lung MDT Directory - service have become intertwined, supporting the needs of patients and, importantly, navigating them towards achieving the best level of care whilst ensuring the patient, their family and carers feel supported, informed and respected. The most significant aspect of the Lung Cancer Nurse Service is that of patient advocate, reflecting and representing the needs of patients nationally and, where appropriate, linking patients back into the health care system. Lung cancer specialist nurse roles are pivotal in representing patient needs within Lung MDT meetings as well as referring them into community support services. However, with the development of the National Lung MDT directory it has become evident there are significant variations among Lung MDT operations: including representation of the different professional disciplines involved in caring for patients with lung cancer; formal communication channels to primary care providers; and providing patients with access to a dedicated Lung Cancer Support Nurse. For example, data from the commencement of the Lung Cancer Nurse Service in July 2015 confirms that not every patient has access to a specialist Lung Cancer Nurse – currently the National Lung MDT directory has highlighted the existence of 30 dedicated Lung Cancer Nurses nationally, which currently equates to one specialised nurse per 400 patients diagnosed with lung cancer. Overall the National Lung MDT Directory and Lung Cancer Nurse Service have become a vital link in delivering efficient, up-to-date information for patients and carers seeking support and guidance. Ultimately the objective of the Lung Cancer Nurse Service is to continue to address the principles of best practice management in lung cancer ensuring: the patient and carer feel supported, informed and respected; all patients receive timely access to all components of their care regardless of location: and patients have access to all relevant treatment and supportive options and, importantly, have well-coordinated lung cancer care. This Service complements the support structures that are already in place, so clinicians can continue to strive to ensure the needs of lung cancer patients can be addressed and increase much-needed support and resources. The experience in establishing this new role within LFA, forming collaborations with national Lung Cancer MDTs and the measurable impact of the role on outcomes for lung cancer patients, will be presented in both qualitative and quantitative terms.
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PA01.05 - Lung Cancer Management in Turkey (ID 6748)
12:15 - 12:30 | Author(s): S. Kansu, B. Koparal, C.M. Gemici, H.F. Batirel, R. Çetingöz, A. Özet
- Abstract
- Presentation
Abstract:
*Seda Kansu Founder Member Pembe Hanım - *Beril Koparal, Vice President Pembe Hanım - * Cengiz MD Gemici Dr Lutfi Kirdar Kartal Training and Research Hospital Department of Oncology - * Hasan Fevzi Batirel MD Marmara University Medical FacultyDepartment of Thoracic Surgery - *Rıza Çetingöz MD.Professor in Medicine Turkish Lung Cancer Society President - *Ahmet Özet MD.Professor in Medicine Turkish Medical Oncology Society President References Pembe Hanım Cancer Patients Society Turkish Society of Medical Oncology Turkish Lung Cancer Society Dr Lutfi Kirdar Kartal Training and Research Hospital Department of Oncology Marmara University Medical FacultyDepartment of Thoracic Surgery The incidence of cancer in Turkey is 267 and 186 in a hundred thousand in men and women respectively. Lung cancer is the number one cause of cancer death in men in Turkey and its incidence is increasing in women in recent years as well. It is the fifth common cause cancer after breast, colon, thyroid and gynecologic malignancies in women in Turkey.The number of cancer cases directly related with smoking is expected to be 31.000. The incidence of lung cancer in men and women is 21.9 and 5.3 in a hundred thousand respectively. Namely there are 50.000 lung cancer patients in Turkey. And each year a new 30.000 patients are added to this number. Between 2009-2013,the incidence of lung cancer among men has decreased from 56 to 51 in a hundred thousand. However the number has increased from 16 to 18 in a hundred thousand among women. This decrease among men is the positive result of effective smoking cessation campaigns as the main cause of lung cancer in Turkey is smoking. The second reason is air pollution in workplaces. Lung cancer is diagnosed generally at late stages in Turkey as well as in the west, and more than 50% of the patients present with metastatic disease at diagnosis. Only minority, less than 20% present with localized disease and these cases are generally detected incidentally for other health reasons. Curative surgery can be offered to only 15% of the patients. There is no effective prevention other than smoking cessation and screening which is becoming more popular for certain risk groups in the west but it is not a proposed method actually in Turkey. Treatment decisions in high volume centers are taken by multidisciplinary way including radiologists, pathologists, nuclear medicine specialists, surgeons, medical and radiation oncologists. Surgery is the primary treatment modality in early stages of disease, and lung cancer surgeons are well experienced throughout the country being able perform all sort of surgical techniques including robotic one with high success. Cancer chemotherapy and radiotherapy are well developed in the country with the availability of recent FDA approved targeted drugs and immunotherapeutic agents as well. Certain centers in Turkey are also included in multinational studies involving new agents in treatment of this disease. Radiation oncology centers are equipped with high technology radiotherapy machines being able to perform image guided intensity modulated radiotherapies and stereotactic radiotherapies in treatment of lung cancer. For the last years prevention programs in Turkey has increased. Two main actions for this are smoking cessation and fight against air pollution. The effectiveness of early diagnosis programs in lung cancer has not been proved. There has been an initiation of screening programs by low dose BT in high-risk patients. The diagnosis and treatment of lung cancer is in line with global standards considering surgery, radiotherapy and chemotherapy. The global improvements in lung cancer is closely followed by oncologists and scientists in Turkey and rapidly integrated into clinical practice by means of prevention, diagnosis, treatment and follow-up. However the patient care in terminal stage should be improved. The set up of Turkish Cancer Institute has been initiated and targets for 2023 are the determination of molecular genetic targets for diagnosis and the treatment of lung cancer, the identification of cellular therapies and immunotherapy and other targeted therapy modalities. In Turkey it is not possible to talk about early diagnosis. But we can talk about early stage diagnosis. The rate of early stage lung cancer patients in Turkey is less than 1/5. Unfortunately population based screening programs for lung cancer has not been approved by Ministry of Health yet. With a screening program a tumor of 1 cm can be diagnosed. However a patient with symptoms being diagnosed has a tumor of 3 cm and the rate of cure between these patients is really different. 5 year survival for a patient with a tumor of 1 cm is 100% and a patient with a tumor of 3cm is 65-70%. Under screening programs for high- risk patients, the risk of death from lung cancer decreases 20%. On the patient organization side Pembe Hanım Association has made the first attempt in Turkey to raise awareness in the public for lung cancer. For four years a Project called “MegaLung” has reached many people talking about the prevention, diagnosis and treatment of lung cancer. This was the first and only project about lung cancer. “MegaLung” had its place in many organizations open to public to reach as many people as possible as lung cancer is a wide range cancer and it has a preventable cause namely smoking. At the moment with the collaboration of members of Pembe Hanım Association, mainly Seda Kansu and Turkish Lung Cancer Society, a patient organization for lung cancer called “Nefes (Breath)” is being set up with the aim of raising awareness among public and lung cancer patients about the all the issues related with lung cancer. * As Pembe Hanım Cancer Patients Society we would like to thank Turkish Society of Medical Oncology,Turkish Lung Cancer Society, Dr Lutfi Kirdar Kartal Training and Research Hospital Department of Oncology and Marmara University Medical FacultyDepartment of Thoracic Surgery for their valuable support. Seda Kansu IASLC Patient Advocates Committee Member References Pembe Hanım Cancer Patients Society Turkish Society of Medical Oncology Turkish Lung Cancer Society Dr Lutfi Kirdar Kartal Training and Research Hospital Department of Oncology Marmara University Medical FacultyDepartment of Thoracic Surgery
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OA04 - Epidemiology and Prevention of Lung Cancer (ID 370)
- Event: WCLC 2016
- Type: Oral Session
- Track: Epidemiology/Tobacco Control and Cessation/Prevention
- Presentations: 1
- Moderators:L. Petruželka, S. Shastri
- Coordinates: 12/05/2016, 11:00 - 12:30, Schubert 4
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OA04.07 - Clinical Characteristics of Lung Adenocarcinoma in the Young: Results from the Genomics of Young Lung Cancer Study (ID 5578)
12:05 - 12:15 | Author(s): B.J. Addario
- Abstract
- Presentation
Background:
Background: Lung cancer is increasingly recognized as a heterogeneous disease comprised of genomically defined subtypes with distinct targetable genomic alterations. However, it is unknown whether established lung cancer risk factors differ between these genomically distinct subtypes. In this study of the genomics of young lung cancer (GoYLC), we present preliminary results of lifestyle risk factors by specific genomic alteration to better characterize lung cancer in the young.
Methods:
Methods: Beginning in July of 2014, patients diagnosed with a bronchogenic lung cancer under the age of 40 were recruited to the GoYLC study. Informed consent was obtained in-person and virtually (online), allowing patients to participate globally, regardless of proximity to study sites (https://www.openmednet.org/site/alcmi-goyl). To date, this study has accrued a total of 101 cases, of which 85 are adenocarcinoma (AC). Stage 4 AC is the focus of this analysis.
Results:
Results: Among the 63 stage 4 AC cases, the most common genomic alterations were ALK rearrangements (n=28; 44% of stage 4 AC cases) and EGFR mutations (n=17; 27%) while the other genomic alterations (n=18; 29%) include ROS1, BRCA2, HER2, P53, RET and ATM. The prevalence of active smoking and/or exposure to passive smoking was highest among those with ALK (64%), intermediate for those with EGFR (47%) and lowest for those with other genomic alterations (39%). However, the prevalence of only active smoking was lowest among those with ALK (28%), followed by EGFR (35%) and highest for those with other genomic alterations (39%). The majority of patients with ALK rearrangements or EGFR mutations reported no family history of lung cancer (82% and 88%, respectively), compared with 67% among those with other genomic alterations.
Conclusion:
Conclusion: These preliminary results suggest that lifestyle characteristics and family history in young lung cancer patients may differ by genomic alteration. Passive smoke exposure was more prevalent among those with ALK rearrangements or EGFR mutations. Those with other genomic alterations, albeit, a heterogeneous group, were least likely to be exposed to passive smoking and more likely to be active smokers. We are continuing to enroll participants and are expanding the epidemiologic characterization to all study patients to evaluate if risk factors also differ by tumor stage and histology (Data to be presented). Importantly, this analysis lays the groundwork for the development of our more comprehensive epidemiology of young lung cancer study that may identify potential lifestyle and environmental risk factors related to specific genomic alterations.
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OA16 - Improving the Quality of Lung Cancer Care - Patients Perspective (ID 399)
- Event: WCLC 2016
- Type: Oral Session
- Track: Patient Support and Advocacy Groups
- Presentations: 2
- Moderators:G. Kreye, D. Tan
- Coordinates: 12/06/2016, 16:00 - 17:30, Schubert 6
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OA16.02 - Shared Decision Making (SDM) and Patient Decision Aids (PDAs) in Lung Cancer: Survey of Patients, Significant Others or Caregivers (Abstract under Embargo until December 4, 7:00 CET) (ID 4767)
16:10 - 16:20 | Author(s): B.J. Addario
- Abstract
- Presentation
Background:
Shared decision making (SDM) between the patient and their physicians is recognized as a desirable goal. When one treatment option is not clearly superior to another, PDAs can help present risks and benefits in a simple, visual format. Of the 600 plus validated PDAs, less than 60 of these are designed for cancer treatment decisions, and only 10 deal with lung cancer diagnosis or treatment (www.ohri.ca/decisionaid). A survey of lung cancer patients or their significant others/caregivers collected information regarding decision making experiences, and the perceived usefulness of PDAs.
Methods:
A survey (via SurveyMonkey) was sent to lung cancer patients/caregivers/significant others who had signed up for email communication from the Bonnie Addario Lung Cancer Foundation (ALCF), Global Resource for Advancing Cancer Education (GRACE), or the University of Colorado. The survey collected information regarding demographics, categorization of the difficult problem, and the sources of problems encountered during decision making. A PDA regarding prophylactic cranial irradiation (PCI) for limited small cell cancer was made available, and opinions were sought regarding the usefulness of this format.
Results:
190 responses were obtained (123 patients, 67 other). This was predominantly a well-educated, white, North American population, with advanced disease, with more women than men (75% vs 25%). 115 (61%) of respondents had faced a difficult decision, women more so than men. Decisions regarding systemic therapy were the most commonly perceived difficult decision (58%) and/or tests that were done/not done (34%). Sources of difficulty were identified as insufficient information (44%), or conflicting information or recommendations from their physicians (34%). The amount of information available was categorized as insufficient, just right, too much or difficult to know in 14%, 22%, 2%, 50%. Men were more likely to indicate that they had sufficient information, 39% vs 14%, p< 0.05. Most patients desired SDM, with only 9% expressing the desire to make the decision alone. However, 26% perceived that they had done so. Fortunately, only 8% of respondents expressed regret regarding their decision. Of 90 respondents who viewed the PCI PDA, 61% felt that this type of decision aid would have been helpful. There were no gender differences regarding opinions towards the PDA, the desire for SDM, or the perception that it had occurred.
Conclusion:
Lung cancer patients desire shared decision making. Improvements in this process are perceived as needed, possibly with PDAs.
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OA16.07 - Patient-Driven Epidemiologic Assessment of ROS1-Fusion Driven Cancers (ID 6239)
17:05 - 17:15 | Author(s): B.J. Addario
- Abstract
- Presentation
Background:
There are limited data on factors that contribute to the development of ROS1-fusion positive cancers. A group of ROS1+ patients approached the Bonnie J. Addario Lung Cancer Foundation (ALCF) for support of ROS1 research. As a first step in this unique, patient-driven effort, we designed a survey to understand epidemiologic/clinical factors that may contribute to the development and progression of ROS1 cancers. We aim to collect data with biospecimens and make these available through an open-access data-sharing platform to accelerate ROS1 research.
Methods:
With guidance from ROS1 patients, we designed a 204-question survey, obtained Stanford University IRB approval. The survey on the ALCF website from May 18, 2016, was widely publicized through conferences, patient support networks, social media and community-based outreach. The survey questions address demographic-, clinical-, diagnostic and treatment- factors, family and reproductive history, dietary, exercise, environmental exposure and hormone and substance use. We used Z-proportions test for statistical significance defined as p<0.05.
Results:
In 53 days, 95 global patients with ROS1-fusion+ cancer responded to the survey (median age at diagnosis 56 years). Respondents were 71% female (n=52/73), 79% never smokers (49/62). 71% respondents were otherwise healthy before diagnosis (n=46/65). The majority of respondents were diagnosed with lung cancer (n=68/72); and one each with gastric, ovarian, cervical and liver cancer. 76% reported metastatic disease (n=52/68) at diagnosis with the most common site of metastases as contralateral lung (65%) and bone (46%). 52% patients reported their ROS1 cancers were not detected at diagnosis (n=35/67); 80% didnot know their specific translocation (51/64). 71% patients received molecular testing on physicians’ orders (n=45/63), with 21% self-initiating molecular testing. Despite the availability of targeted treatments and clinical trials, most patients were prescribed chemotherapy in their first (62%), second (49%), third (60%) and further lines of therapy. 76% patients reported that crizotinib was the therapy that worked best, with 96% reporting significant improvement in symptoms and QoL. We found no significant correlations between oral contraceptive/hormone/anabolic steroid use, occupational exposure, geographic area of employment/residence, family history of cancer, and incidence of ROS1+ cancer.
Conclusion:
This is a unique patient and non-profit advocacy group-driven investigation that seeks to understand factors that may influence development and treatment of ROS1 cancers. The results highlight patient-centricity, the importance of upfront molecular testing and targeted therapies. We report patient-reported experiences with ROS1 testing and durable responses to targeted treatments e.g. crizotinib. As the study is ongoing, we will update results in December 2016.
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P3.06 - Poster Session with Presenters Present (ID 492)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Trial Design/Statistics
- Presentations: 1
- Moderators:
- Coordinates: 12/07/2016, 14:30 - 15:45, Hall B (Poster Area)
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P3.06-008 - Employing Remote Web Consenting and Social Media to Facilitate Enrollment to an International Trial on Young Lung Cancer (ID 4180)
14:30 - 14:30 | Author(s): B.J. Addario
- Abstract
Background:
In 2014, the Addario Lung Cancer Medical Institute (ALCMI) launched a prospective study to characterize somatic and germline genomics of adolescents and young adult (AYA) patients under the hypothesis that lung cancer diagnosis at younger ages (<40) are more likely to have targetable genomic alterations. It is estimated that less than 2% of those newly diagnosed with lung cancer globally are AYA, thus presenting a striking recruitment challenge.
Methods:
The study workflow includes a dedicated website enabling e-consenting so patients can participate remotely from anywhere in the world, including the underserved, and employs social media to share our trial. We have an integrated data and bio repository that allows for seamless communication and completion of study activities including routing of blood and tumor specimens. ALCMI's "sister" foundation, the Bonnie J. Addario Lung Cancer Foundation, played a key role in educating patient and caregiver communities, including a social media campaign.
Results:
Accrual opened July 23, 2014. In the first 5 weeks of the study, 37 subjects consented versus the 5 projected. Of the 37 initially consented, 35 enrolled via the remote web-portal. As of June 15 2016, 104 subjects are enrolled (128 consented) in the study from 10 countries following a social media campaign of 89 discrete postings resulting in 21,062 active users out of 391,222 individual viewers and 675,680 impressions. Of the 104 subjects enrolled to date, 49% entered the study via the remote study portal with the balance recruited locally by participating ALCMI study sites. 45% of total accruals to date resulted from the education outreach by patient advocacy and patient to patient social networking.Figure 1
Conclusion:
This study clearly demonstrates the utility, speed and feasibility of remote, web-based screening and consenting platforms supported by patient-centric, advocate-driven social media efforts as novel approaches to "bringing research to the patient" for global clinical trials.
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SC31 - Together Against Lung Cancer - A Strategy for Success in the 21st Century (ID 355)
- Event: WCLC 2016
- Type: Science Session
- Track: Regional Aspects/Health Policy/Public Health
- Presentations: 1
- Moderators:M. Boyer, P.E. Postmus
- Coordinates: 12/07/2016, 14:30 - 15:45, Hall C7
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SC31.02 - The Role of Patient Advocacy Groups (ID 6732)
14:50 - 15:10 | Author(s): B.J. Addario
- Abstract
- Presentation
Abstract:
The role of Patient Advocacy organizations in the oncology health care delivery ecosystem is ever evolving and has moved well beyond its original role of solely advocating for services, research, care and understanding. The current field of patient advocacy has its roots in the patient rights movement of the 1970’s with groups like The National Welfare Rights Organization being instrumental in getting a patient bill of rights accepted by the Joint Commission on Accreditation of Healthcare Organizations in 1972[1]. The transformation was further accelerated in 1991 with the formation of the FDA Patient Representative Program and has continued to expand over time with patient advocates now being involved in the entire care continuum. In this presentation I will focus my attention on examples of the ever evolving and expanding role of patient advocacy highlighted by projects developed and led by "partner" foundations the Bonnie J. Addario Lung Cancer Foundation (ALCF) and the Addario Lung Cancer Medical Institute (ALCMI). Addressing Disparities in Care The disparities in lung cancer treatment and outcomes among underserved populations are well documented[2]. Further, 80% of cancer patients are treated in the community hospital setting yet may not receive the same level of care as those treated at leading academic centers. The ALCF Community Hospital Centers of Excellence (COE) program addresses this unmet need. The COE program is a patient-centric model for lung cancer that establishes a standard of care for community hospitals which often treat underserved patient populations. The COE program, which currently includes 13 hospitals in regions of high unmet need, aims to improve the standard of care, patient experience and patient outcome by offering patients and caregivers the same type of multi-disciplinary and comprehensive care provided at leading academic centers. ALCF also provides lung cancer education and services to patients, caregivers and the community. The COE program tracks patient process data longitudinally for multiple quality-of-care metrics, including disease stage at diagnosis; molecular testing; tumor board review; time from diagnosis to treatment; treatment type; and clinical trial participation. Site data will also be monitored to provide a contextual picture of the program including total patients seen, demographics, insurance mix, rates and outcomes of molecular testing among other metrics. Data is analyzed across the COE community and against comparator groups to demonstrate impact of the COE program[3]. Accelerating Clinical Trial Accrual The U.S. National Institutes of Health database currently lists over 45,000 cancer-related clinical trials worldwide[4]. Unfortunately, more than 20% of these trials will never complete, for reasons unrelated to the effectiveness of the intervention that’s being tested. The most common reason for 20% of all clinical trials never finishing is poor patient accrual. One of the most common reasons for low accrual is procedural inefficiencies such as complexities in enrolling in the trial itself and the informed consent process. In 2014, ALCMI launched a prospective study to characterize somatic and germline genomics of adolescents and young adult (AYA) patients[5]. It is estimated that less than 2% of those newly diagnosed with lung cancer globally are AYA, thus presenting a striking recruitment challenge. To address this challenge, ALCMI's study workflow included building a dedicated website[3] enabling remote screening and e-consenting so patients could participate from their homes anywhere in the world while, in parallel, ALCF employed social media to educate patients on the importance of comprehensive genomic profiling and increasing awareness of the study via grass-roots patient blogging. Together, ALCMI and ALCF bring "research to the patient". Accrual opened July 23, 2014 and in the first 5 weeks of the study, 37 subjects consented. Of the 37 initially consented, 35 enrolled via the remote web-portal. As of June 15 2016, 104 subjects are enrolled (128 consented) in the study from 10 countries following a social media campaign. Of the 104 subjects enrolled to date, 49% entered the study via the remote study portal with the balance recruited locally by participating ALCMI study sites Conclusion As briefly outlined above, patient advocacy organizations have moved well beyond their original patient supportive role and have become key players in the oncology healthcare delivery and clinical research ecosystems. As the healthcare system continues to evolve and become more complex so will the role of patient advocacy organizations. To address these challenges, there will be even greater need for innovation, sharing of data and resources, increased infrastructure and mission sophistication, the need to avoid overlap and duplication, and a laser focus on providing meaningful improvement in the availability, transparency and affordability of healthcare. References: 1. Ruth R. Faden, Tom L. Beauchamp, A History and Theory of Informed Consent, (Oxford University Press, 1986), 93 2. http://www.gotoper.com/publications/ajho/2015/2015feb/lung-cancer-disparities-in-the-era-of-personalized-medicine 3. Leah Fine[1], Guneet Walia[1], Raymond U. Osarogiagbon[2]; [1]Addario Lung Cancer Foundation, San Carlos/United States of America, [2]Baptist Cancer Center, Memphis, TN/United States of America. The ALCF Centers of Excellence Model Delivers a Standard of Care to the Community Similar to Academic and Research Centers. World Conference on Lung Cancer, Abstract 6334, December 2016 4. https://clinicaltrials.gov. 5. Barbara J. Gitlitz, Alicia Sable-Hunt, Steven W. Young, Andreas Kogelnik, Danielle Hicks, Deborah Morosini, Tiziana Vavala, Marisa Bittoni, S. Lani Park, Silvia Novello, Geoffrey R. Oxnard, Bonnie Addario (in press). Employing Remote Web Consenting and Social Media to Facilitate Enrollment to an International Trial on Young Lung Cancer. World Conference on Lung Cancer, Abstract 4180, December 2016 6. https://www.openmednet.org/site/alcmi-goyl
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