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Sandra Shaw
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P1.14 - Targeted Therapy (ID 182)
- Event: WCLC 2019
- Type: Poster Viewing in the Exhibit Hall
- Track: Targeted Therapy
- Presentations: 1
- Moderators:
- Coordinates: 9/08/2019, 09:45 - 18:00, Exhibit Hall
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P1.14-29 - Disrupting the Paradigm: Partnering with Oncogene-Focused Patient Groups to Propel Research (ID 1498)
09:45 - 18:00 | Author(s): Sandra Shaw
- Abstract
Background
Genomic alterations drive more than 60% of adenocarcinoma cases of non-small cell lung cancer (NSCLC). About 20% of cases will have an oncogenic driver (EGFR, ALK, ROS1, BRAF, NTRK, etc.) that can be treated with approved targeted therapy drugs, and more (RET, Exon 20 insertions, etc.) have clinical trial options. Patients and caregivers dealing with these cancers have organized globally into oncogene-focused groups (“Groups”—see Table 1) and are building partnerships that seek to provide support, increase awareness and education, accelerate and fund research, and improve access to effective diagnosis and treatment.
Method
We partnered in a variety of ways to accelerate research. While each Group sets its own research priorities, we’ve found successful collaborative research has the following seven characteristics. It includes patients from the start, in all aspects of the project. It addresses questions meaningful to patients. It develops patient-centered measurements. It accommodates patients’ clinical realities. It leverages social media and patient groups. It shares progress with participants frequently. It makes results rapidly and freely available.
Result
These methods have enabled the Groups to collaborate successfully with clinicians, researchers, advocacy organizations, and industry to generate ideas for next steps in research for their disease, forge new studies and clinical trials for a specific oncogenic driver, create new patient-derived models of oncogene-driven cancers to study acquired resistance, develop registry-based studies to collect real-world data, and guide patients to clinical trials.
Conclusion
Oncogene-focused patient-caregiver groups are creating new paradigms across the research continuum. They have demonstrated that their partnerships with advocacy organizations, clinicians, researchers, and industry, can increase available patient-derived models, patient data, and specimens among geographically distributed, oncogene-driven cancer populations.
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P2.16 - Treatment in the Real World - Support, Survivorship, Systems Research (ID 187)
- Event: WCLC 2019
- Type: Poster Viewing in the Exhibit Hall
- Track: Treatment in the Real World - Support, Survivorship, Systems Research
- Presentations: 1
- Moderators:
- Coordinates: 9/09/2019, 10:15 - 18:15, Exhibit Hall
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P2.16-23 - Rates of Support and Care Offerings Among Patients in an Advocacy Organization Sponsored Lung Cancer Patient Registry (ID 2683)
10:15 - 18:15 | Author(s): Sandra Shaw
- Abstract
Background
We conducted a survey of lung cancer patients and caregivers in the United States in 2015 and 2016 that identified gaps in access to supportive care and patient education. An additional survey of patients and caregivers in 2016 revealed low rates of molecular testing among lung cancer patients despite being recommended by clinical guidelines. In order to gauge how much progress has been made in addressing these gaps, we looked at self-reported rates among participants in a lung cancer patient registry founded by a patient advocacy organization, the GO2 Foundation for Lung Cancer.
Method
The Lung Cancer Registry, supported by the GO2 Foundation for Lung Cancer, and partners The American Lung Association and The International Association for Lung Cancer, collects self-reported data from lung cancer patients and caregivers through an online interface on a variety of topics related to patients’ lung cancer diagnoses and care experiences. For this study, we analyzed data collected from 939 registry participants between November 2016 to December 2018 on supportive care, assistance, and molecular testing offerings to patients.
Result
The majority of registry participants reported that their doctors had discussed future treatment options beyond their current line of therapy with them (72%) and that care navigation help had been offered to them by a nurse navigator or care coordinator (60%). Additionally, most participants (88%) reported their clinic had provided educational materials related to their diagnosis or treatment. High rates of molecular testing were also reported among registry participants (76%). Testing most commonly occurred at initial diagnosis.
Conclusion
Registry participants were offered navigation and patient education resources at high rates. Additionally, molecular testing was offered at high rates occurring early in care. This suggests that significant progress has been made by the lung cancer community in the United States to address previously identified gaps in certain aspects of support and care. However, registry participants represent a highly educated, technology-enabled population, indicating that gaps may still exist and should be looked at further in other demographics such as in rural and lower socio-economic areas where lung cancer is common.
