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S. Mantel
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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): S. Mantel
- 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: 3
- Moderators:
- Coordinates: 12/06/2016, 14:30 - 15:45, Hall B (Poster Area)
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P2.08-003 - Quality of Life and Patient Reported Outcome Measures for Lung Cancer Patients; Treatment Outcomes, and Patient Management (ID 3896)
14:30 - 14:30 | Author(s): S. Mantel
- Abstract
Background:
Patients with lung cancer rank maintaining their independence and being able to care for themselves as being of greater importance than the symptoms of their disease. Quality of life (QOL) and patient reported outcomes (PRO) provide measures of patients’ physical, functional, and psychosocial wellbeing.
Methods:
In October 2015, advocacy organization executives met to review and evaluate the importance of QOL and PROs within the context of clinical trials and their usefulness during the care of patients with lung cancer by community oncologists. The discussion included the impact of QOL, cancer-related weight changes, diet, and exercise on patients’ overall health and advocating the importance of QOL and PRO assessments in patients with lung cancer through social media.
Results:
QOL and PRO measures are associated with treatment outcomes and may be useful in patient management to evaluate individual treatments and survival. Malnourishment, common in patients with lung cancer, reduces survival. Reduced appetite contributes to cancer cachexia and sarcopenia. Sarcopenia can lead to frailty, decreasing patients’ independence and tolerance and responsiveness to treatment. Early intervention to improve diet and prevent weight loss of greater than >10% greatly improves patients’ functional status and facilitates cancer treatment. Where possible, activity should be encouraged. Exercise throughout cancer treatment is safe for cancer patients and improves physical function and QOL. Information about the importance of enhanced diet and exercise and the usefulness of QOL and PROs in the management of patients with lung cancer could be shared via social media.
Conclusion:
Patients with lung cancer value QOL more than symptom management. Clinical trial data suggest that higher baseline QOL and PROs correlate with better disease outcome; these tools may be useful in the overall management of patients (Hollen 2014). Treatments should be evaluated based on their impact on QOL and PROs as well as survival. Weight maintenance and exercise are essential for patients overall health and QOL, and should be included in patients’ treatment planning. Social media may be effective in raising awareness among patients with lung cancer and their caregivers about the importance of enhanced diet and exercise. Further discussion and research about the usefulness of QOL and PRO measures in the management of patients with lung cancer is warranted. Reference: Hollen PJ, Gralla RJ, Kris MG, et al. Measurement of quality of life in patients with lung cancer in multicenter trials of new therapies. Psychometric assessment of the Lung Cancer Symptom Scale. Cancer. 1994;73(8)2087-98.
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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): S. Mantel
- 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): S. Mantel
- 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.
