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G. Kreye
Moderator of
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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: 8
- Moderators:G. Kreye, D. Tan
- Coordinates: 12/06/2016, 16:00 - 17:30, Schubert 6
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OA16.01 - The Role of Patient Groups in Integrating the Patient Voice into Drug Funding Decisions (ID 4291)
16:00 - 16:10 | Author(s): C. Sit, H. Mai, A. Chambers, P. Wheatley-Price
- Abstract
- Presentation
Background:
The recent emergence of multiple new targeted therapies and immunotherapy drugs has significantly increased options in the systemic treatment of lung cancer (LC). While great news for patients, in the current environment of scarce health care resources, government agencies deliberating on public funding of cancer drugs struggle with ensuring sustainability of the public health system due to increasingly expensive drug costs. In Canada, the Pan-Canadian Oncology Drug Review (pCODR), a program of the Canadian Agency for Drugs and Technologies in Health (CADTH), provides recommendations that informs public funding decisions for cancer drugs. pCODR’s recommendations apply an evidence-based deliberative framework which considers the drugs clinical benefit, patient-based values, cost-effectiveness and adoption feasibility. As part of the pCODR review, patient input is integrated into the clinical and economic reports and recommendations. Patient groups, such as Lung Cancer Canada (LCC), can play a pivotal role by synthesizing the evidence gathered from patients and caregivers to inform the pCODR process.
Methods:
Both quantitative and qualitative techniques were used to gather data for LCC’s pCODR submissions. A national survey – the Faces of Lung Cancer (FOLC) - illustrated the perceptions and general unmet needs of those living with LC. Focus groups, one-on-one interviews and audits of patient discussion boards gathered the insights of patients and caregivers with experience on the drug under consideration. Patients were identified through LCC’s Medical Advisory Committee and their networks, clinical trial investigators, outreach to other patient groups and scans of LC patient/caregiver discussion boards.
Results:
Since 2014, LCC has made five pCODR submissions. 91 patients and 72 caregivers participated in the FOLC survey. The insights of an additional 62 patients and 38 caregivers with experience on the drugs under consideration were gathered qualitatively. LCC’s submissions describe the emotional, practical and logistical challenges of living with LC, and illustrate the “life impact” of the drug under consideration. - factors not traditionally included in clinical trial design.
Conclusion:
pCODR’s deliberative process, partnered with LCC’s methodology, may be an effective model to aid public funding discussions of new cancer drugs. pCODR and the reviewers have found patient group submissions valuable in providing lived-experience insight, at times changing perspectives. LCC’s contribution has been strongly reflected in the funding guidance reports. To supplement its process, pCODR recently launched a pilot project to include clinician input in the review process. The impact of the pilot will be assessed as data becomes available.
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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): L. Gaspar, H.J. West, B.J. Addario, D..R. Camidge
- 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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OA16.03 - The ALCF Centers of Excellence Model Delivers a Standard of Care to the Community Similar to Academic and Research Centers (Abstract under Embargo until December 4, 7:00 CET) (ID 6334)
16:20 - 16:30 | Author(s): L. Fine, G. Walia, R.U. Osarogiagbon
- Abstract
- Presentation
Background:
The disparities in lung cancer treatment and outcomes among minorities are well documented.1 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 Bonnie J. Addario Lung Cancer Foundation (ALCF) 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 minority and 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.
Methods:
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.
Results:
The COE program serves thousands of patients each year with a significant representation of minorities and underserved populations. Baptist Memorial Health Care System is an example of a COE that has demonstrated implementation of the COE model by providing multi-disciplinary care to a diverse population. Among those reporting race at Baptist, minorities represent more than 30% of lung cancer patients. Memorial Health Care System is another COE that is reaching and serving a diverse patient population. The patient mix at Memorial is : 64% whites; 18% Hispanics; and 18% African American. At Memorial, approximately 10% of the patient population is uninsured. Further, Memorial molecularly tests all stage III/IV patients. Compared with community hospitals in the National Cancer Database the patient mix is about 84% white, 2.5% Hispanic and 11% African American with 3% uninsured.
Conclusion:
The ALCF COE program is demonstrating that underserved lung cancer patient populations can be reached and receive standard of care treatment. The patient-focused COE approach effectively removes barriers to quality care.
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OA16.04 - Discussant for OA16.01, OA16.02, OA16.03 (ID 6963)
16:30 - 16:45 | Author(s): J. Schiller
- Abstract
- Presentation
Abstract not provided
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OA16.05 - Socioeconomic Determinants of Late Diagnosis of Lung Cancer in France: A Nationwide Study (the TERRITOIRE Study) (ID 4840)
16:45 - 16:55 | Author(s): P.J. Souquet, I. Durand-Zaleski, C. Chouaid, D. Debieuvre, A. Scherpereel, J. Fernandes, V. Westeel, C. Blein, A. Gaudin, S. Leblanc, H. Lemasson, N. Ozan, F. Cotté, P. Chauvin
- Abstract
- Presentation
Background:
Socioeconomic disparities in survival of patients with lung cancer have been identified in many countries. The aim of this study was to examine determinants of late diagnosis of lung cancer in France.
Methods:
All patients with a first diagnosis of lung cancer in 2011 in the National hospitals databases were included. Information on gender, age, presence of metastasis at diagnosis and any significant chronic comorbidities (hypertension, diabetes mellitus, renal insufficiency, and other chronic lung diseases) was retrieved. Based on municipality of residence, patients were classified by population density, social deprivation, access to general practitioners and pulmonologists.
Results:
We identified 41,015 patients newly diagnosed for lung cancer in French hospitals. Mean age at diagnosis was 66.4 (±11.9) years and 72% patients were men. 53% (N=21,613) patients were metastatic at the time of diagnosis. This rate was higher for patients in public compared to private hospitals (56.1% vs 42.9%, p<0.0001) and in community compared to university hospitals (60.2% vs 49.6%, p<0.0001). Multivariate analysis found that metastases at the time of diagnosis were significantly associated with a younger age (55 years or less, OR: 1.22 [95%CI:1.16–1.29]; p<0.0001), a low access to pulmonologists (OR: 1.13 [95%CI:1.04–1.23]; p=0.004), a rural or semi-rural dwelling (OR: 1.07 [95%CI:1.02–1.13]; p=0.004) and deprived areas (OR: 1.06 [95%CI:1.01–1.11]; p=0.01). Of the 8,413 patients (20%) who were initially admitted through emergency room (ER) 68.1% had metastatic tumors. Multivariate analysis showed significantly higher rate of admission through ER at diagnosis in patients from most deprived areas (OR: 1.44 [95%CI:1.37–1.52]; p0.0001), rural or semi-rural (OR: 1.25 [95%CI:1.19–1.32]; p<0.0001), with a low access to pulmonologists and general practitioners (OR: 1.24 [95%CI:1.17–1.30]; p<0.0001 and 1.15 [95%CI:1.08–1.23]; p<0.0001, respectively). Gender (male) and presence of comorbidities were also significant determinants of metastatic disease and admission through ER at diagnosis.
Conclusion:
A majority of French patients with lung cancer were initially metastatic at the time of diagnosis and 1 out of 5 were diagnosed following admission through ER. Residential socioeconomic indicators and access to general practitioners and pulmonologists were significantly associated with these indicators of poor outcome.
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OA16.06 - Willingness for Multiple Biopsies to Improve Quality of Lung Cancer Care: Understanding the Patient Perspective (ID 6052)
16:55 - 17:05 | Author(s): U. Basu Roy, S. Mantel, M. Jacobson, A. Ferris
- Abstract
- Presentation
Background:
In this era of precision medicine, biomarker testing of cancer tissue is sometimes necessary to match the right patient to the right treatment. A patient might need multiple biopsies if there is recurrence of lung cancer, or to determine eligibility for a new drug or participation in a clinical trial. Anecdotal evidence suggests that physicians are unwilling to recommend additional biopsies because they assume that the patients are likely to refuse.
Methods:
To understand this patient-physician communications gap, we asked 340 lung cancer survivors through an online survey about their willingness to undergo additional biopsies. The survey was fielded through various social media platforms as well as through an independent research panel.
Results:
Three-quarters of the survivors surveyed indicated their willingness to have an additional biopsy, regardless of whether they reported any pain or complications from their initial biopsy. Specifically, among the survivors who were willing to undergo an additional biopsy: Almost all of the survivors (82%) would do so if it would help their health care team better match treatment to their specific cancer and personalize their care, versus just being told the test was to look for mutations. In other words, understanding the end benefit of having the test is an important piece of communication. Although almost 50% reported pain or complications from their initial biopsy, this group indicated equal willingness to have another biopsy as those without any issues. If the doctor were to recommend an additional biopsy or a biopsy after the start of treatment, nearly half would definitely undergo one. About two-thirds of the survivors felt that their doctor explained the reason for getting their initial biopsy really well.
Conclusion:
The study reinforces the importance of a patient-centric model in medicine–in which meaningful and timely information is provided to patients to enable them to be partners in their own care. The study has the following implications for different stakeholders: Patients: To ask their doctor about new treatments and discuss the need for additional biopsies if necessary. Understanding the end benefit of having the test is an important piece of communication. Patient Advocacy Organizations: To educate patients and physicians about having an open dialogue to help patients become equal partners in their treatment decision-making. Physicians: To discuss the benefits and the risks of an additional biopsy with their patients and how it may help decide course of treatment.
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OA16.07 - Patient-Driven Epidemiologic Assessment of ROS1-Fusion Driven Cancers (ID 6239)
17:05 - 17:15 | Author(s): G. Walia, R. Patients, B.J. Addario, M.I. Patel, 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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OA16.08 - Discussant for OA16.05, OA16.06, OA16.07 (ID 6978)
17:15 - 17:30 | Author(s): P. Berzinec
- Abstract
- Presentation
Abstract not provided
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