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D. LeDuc
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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: 1
- Moderators:G. Kreye, D. Tan
- Coordinates: 12/06/2016, 16:00 - 17:30, Schubert 6
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OA16.07 - Patient-Driven Epidemiologic Assessment of ROS1-Fusion Driven Cancers (ID 6239)
16:00 - 17:30 | Author(s): D. LeDuc
- 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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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: 1
- Moderators:B.J. Addario, B. Bajec
- Coordinates: 12/05/2016, 11:00 - 12:30, Schubert 6
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PA01.03 - Establishing a Paradigm for High Quality Lung Cancer Treatment (ID 6746)
11:00 - 12:30 | 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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