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U. Basu Roy
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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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OA16.06 - 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
- 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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P2.08 - Poster Session with Presenters Present (ID 491)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Patient Support and Advocacy Groups
- Presentations: 2
- Moderators:
- Coordinates: 12/06/2016, 14:30 - 15:45, Hall B (Poster Area)
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P2.08-005 - Treating Cachexia-Anorexia in Lung Cancer Patients: Understanding the Patient Perspective on Novel Treatment Approaches (ID 6284)
14:30 - 14:30 | Author(s): U. Basu Roy
- Abstract
Background:
Cachexia-anorexia (CA) is a weight loss/appetite loss syndrome commonly affecting cancer patients. It is characterized by progressive sarcopenia (loss of muscle mass) accompanied by weight and appetite loss. These physiological changes lead to a decreased ability to perform daily activities, a reduction in the quality of life of the patient, and a decrease in the efficacy of chemotherapy and other treatments. Typically, oncologists focus on palliation of the symptoms of CA, and the reduction of distress of patients and families instead of on a cure. Recently, drugs that offer the possibility of treatment have shown promise in clinical trials.
Methods:
We conducted an online survey of lung cancer patients to understand: Prevalence of CA among lung cancer patients Extent of impairment of quality of life of lung cancer patients How patients are managing the symptoms of CA The study was approved by Schulman IRB, Inc (IRB#201600600). Three hundred and thirty-five lung cancer patients were surveyed through different online platforms (social media and LUNGevity homepage).
Results:
Of the lung cancer patients surveyed, Six in ten report experiencing one or more of the physical changes asked about (unintended weight loss, loss of appetite, loss of muscle mass, and malnutrition) Patients currently undergoing treatment and Stage IV patients are more likely to experience these changes and be concerned than those who are not currently undergoing treatment or have less advanced lung cancer Unintended weight loss and other physical changes are most likely to lead to a decline in patients’ strength, energy level, and ability to engage in physical activities. Among patients who experienced a decrease in quality of life, the most important aspects they would like to improve or maintain are their energy level and their ability to remain independent. Patients were measured in their willingness to try new treatment approaches, especially when presented with a description of the adverse events associated with treatment.
Conclusion:
Cachexia-anorexia is common in lung cancer patients, including early-stage patients. Patient attitudes towards CA differ among those whose quality of life has been impaired due to weight loss and those who are able to continue living a normal life. Maintaining a sense of independence was of primary importance to all patients. Their willingness to try new treatment options, however, is based on understanding both the benefits and risks of these treatments, suggesting that a well-informed patient is more effectively engaged in their treatment decisions.
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P2.08-009 - Need for Consistent Language around Biomarker Testing in the Diagnosis and Treatment of Lung Cancer (ID 6281)
14:30 - 14:30 | Author(s): U. Basu Roy
- Abstract
Background:
Lung cancer patients now have the option of targeted therapies or immunotherapies. However, not all eligible patients are benefiting from these treatment approaches, partly due to lack of tumor testing. To determine whether inconsistent communications could be a contributor to the suboptimal biomarker testing rates, we conducted a communications audit to determine what terminology is currently being used, to come to a consensus on consistent terminology to describe the testing used to help choose lung cancer treatments.
Methods:
In phase I, we surveyed 28 organizations (patient advocacy organizations, pharmaceutical/ testing companies, government and health sites) with the aim of identifying various terms being used to reference molecular tumor testing. In addition, in-depth interviews were conducted with 15 lung cancer patients to gain insights into their understanding of molecular testing. Results from Phase I were discussed during a stakeholder meeting (Phase II) with 21 representatives of 11 different advocacy and pharmaceutical companies to come to agreement on terminology.
Results:
In Phase I, 9,379 mentions of eight different terms to reference molecular testing and targeted therapy were inventoried (Table). Overall, there were too many terms, with inconsistent usage. Patient interviews revealed that there was disparity between the terms used to talk to health care practitioners and to patients, thereby setting up a communications gap. In the Phase II meeting, stakeholders agreed on the importance of a more unified message to achieve common understanding of molecular testing and targeted therapies. Biomarker testing was the strong favorite. It integrates the concept of “biology” of the tumor and is more inclusive than “molecular testing,” now that PD-L1 testing is also a consideration for the new class of immunotherapy.Searched Terms Pharma/BioTech Testing Gov’t/Private Cancer Orgs Lung Cancer Orgs Genetic Testing 77 65 1082 295 395 Molecular Testing 173 270 742 124 331 Mutation Testing 21 111 485 143 274 Biomarker Testing 109 172 390 29 156 Genetic Diagnostic 26 66 770 111 109 Molecular Diagnostic 113 231 798 94 98 Mutation Profiling 22 78 254 2 88 Molecular Pathways 74 91 787 35 88
Conclusion:
Consistent use of the term “biomarker testing” to encompass both targetable molecular mutations and PD-L1 protein expression is recommended for all stakeholders, allowing for additional elaboration on specific tests.
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P3.07 - Poster Session with Presenters Present (ID 493)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Regional Aspects/Health Policy/Public Health
- Presentations: 1
- Moderators:
- Coordinates: 12/07/2016, 14:30 - 15:45, Hall B (Poster Area)
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P3.07-006 - Estimating Time Equivalents for Cancer Side Effects among Lung Cancer Survivors and Caregivers: A Discrete-Choice Experiment (ID 6066)
14:30 - 14:30 | Author(s): U. Basu Roy
- Abstract
Background:
While there is a growing literature on estimating the tradeoffs between the benefits and risk of cancer care, there is a paucity of literature exploring preferences for the collateral damage associated with long-time side effects. We estimated the treatment preferences of lung cancer survivors and caregivers, and the time equivalents for multiple domains of long-term side effects.
Methods:
Through rigorous engagement of a national advisory board of lung cancer survivors, a discrete-choice experiment (DCE) was developed, pretested and piloted. The DCE was administered to lung cancer survivors and caregivers at a national summit. Respondents completed 13 paired-comparison choice tasks described across six attributes: progression-free survival (PFS), short-term side effects, and physical, emotional, cognitive, and functional long-term side effects. A continuous preference model was estimated using mixed logit. Using PFS as the numeraire, the preference for avoiding side-effects were estimated using their time equivalents by using maximum simulated likelihood.
Results:
Of 114 survey participants, 102 (89.4%) completed all choice tasks - although no difference was identified between those who did not complete the task (p>0.05 for all observed characteristics). All attributes were statistically different form the null (p<0.001). Respondents valued a one-unit decrease in functioning the most, valuing it equivalent to extending PFS by 3.67 months. Changes in physical (2.34) and cognitive (2.29) were valued more than a composite of all short-term side effects (1.83). Heterogeneity analyses (see figure 1) indicated that avoiding long-term side effects could be valued even more highly for some respondents. For example. the 95% confidence interval for time equivalence of functional long-term side effects ranged from 0.62 to 13.31 months.Figure 1
Conclusion:
Despite the limitation of this small, retrospective study, the results indicate that avoiding the long-term side effects could have significant value, especially as many patients experience moderate long-term side effects across multiple domains.
