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Jill Feldman
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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): Jill Feldman
- 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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P1.16 - Treatment in the Real World - Support, Survivorship, Systems Research (ID 186)
- Event: WCLC 2019
- Type: Poster Viewing in the Exhibit Hall
- Track: Treatment in the Real World - Support, Survivorship, Systems Research
- Presentations: 1
- Moderators:
- Coordinates: 9/08/2019, 09:45 - 18:00, Exhibit Hall
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P1.16-48 - Experiences of Pts on 1st Line Care (EP1C): Symptoms and Impacts of EGFR TKI Therapy on Real-World Daily Lives of NSCLC Pts (ID 1223)
09:45 - 18:00 | Author(s): Jill Feldman
- Abstract
Background
Approximately one third of patients with NSCLC have tumours harbouring actionable EGFR mutations (Zhang et al. Oncotarget 2016). These patients are routinely treated with EGFR-tyrosine kinase inhibitors (TKIs) that are approved based on their efficacy and safety in clinical trials. Clinical trials do not fully reflect patient experiences as felt and perceived by patients, and in the real world, symptoms related to EGFR-TKIs and impact on patients’ daily lives are not well documented or understood. EP1C assessed patients’ experience with EGFR-TKIs and their impact on patients’ daily lives. Patient insights gained from EP1C can help guide symptom management strategies and improve communication with patients, helping to improve outcomes and quality of life.
Method
This pilot, non-interventional, US-based, real-world study involved individual interviews with adult patients. Eligible patients were those diagnosed with EGFR-mutated metastatic NSCLC, taking one of three US-approved EGFR-TKIs (erlotinib/afatinib/osimertinib) as first-line treatment. Exclusion criteria included: major surgery or radiation therapy three months before treatment, chemotherapy or other therapy as first-line treatment, a second active cancer, or a cognition or sensory issue. Trained qualitative interviewers used a semi-structured interview guide, and conducted all interviews by telephone. Rating questions were included for the severity and degree of bother caused by their symptoms (0–10 point response scale: 0=not at all severe, 10=extremely severe). All interviews were audio recorded, transcribed and coded (ATLAS.ti software) for analysis of similar themes.
Result
A total of 19 patients participated in the interviews. The average age was 54.0 years (range 37–76). The sample was 73.7% female (n=14), and 89.5% (n=17) had an education level of college or above. The most frequently reported symptoms were respiratory and gastrointestinal symptoms (n=18; 94.7% each), skin-related sympoms (n=18; 94.7%), discomfort and pain (n=17; 89.5%), hair and nail-related symptoms (n=17; 89.5% each), fatigue and other energy-related symptoms (n=15; 78.9%).
Ratings of severity and bothersomeness trended toward the mid-range of the scale (4.0 to 6.0) for most of the more commonly reported symptoms. The higher ratings were seen for very specific symptoms reported by only one or two patients, including constipation (8.0 severity/8.0 bother), armpit rash (7.0/8.0), tightness in throat (8.0/8.0), mouth soreness (8.0/9.0) and stinging/burning in the genital area (10.0/10.0).
All 19 patients reported impacts on their daily performance and emotional health. Sleep difficulties were reported by 12 patients (63.2%), and 9 patients (47.4%) reported limitations with inter-personal relationships and social functioning. The impacts on patients’ daily activities (work, chores, daily routine; 7.8) and emotions (anxiety, worry, fear and depression; 7.2) were found to be the most difficult to cope with. Several specific impacts, reported by fewer patients, included decreased independence (n=2; 7.0), economic burden (n=6; 7.7), and childcare difficulties (n=2; 8.5).
Conclusion
In EP1C, real-world interviews allowed patients to express a broader range of symptoms and impacts compared with clinical trials, which mostly focus on symptoms. Some of the traditionally less commonly reported symptoms had a greater impact on patients’ daily lives. Clinicians should also consider these when assisting patients in managing their symptoms.
