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Gabriella Salvatore



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    P1.15 - Treatment in the Real World - Support, Survivorship, Systems Research (Not CME Accredited Session) (ID 947)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 1
    • Moderators:
    • Coordinates: 9/24/2018, 16:45 - 18:00, Exhibit Hall
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      P1.15-16 - ALKConnect: An Anaplastic Lymphoma Kinase Positive (ALK+) Non-Small Cell Lung Cancer (NSCLC) Patient Insights Network (ID 12967)

      16:45 - 18:00  |  Author(s): Gabriella Salvatore

      • Abstract
      • Slides

      Background

      ALK+ NSCLC is a subset of NSCLC present in ~3-5% of NSCLC patients. Little is known about ALK+ NSCLC patients’ unique journeys, their perspectives on the burden of disease, and their ‘real-world’ treatment experiences. Online patient networks provide opportunities to gain valuable insights into outcomes meaningful to patients, directly from patients. The objective of this study is to develop an ALK+ NSCLC patient network to facilitate patient interaction and to conduct patient-centered research including understanding unmet needs, patient preferences, health-related quality of life (HRQoL), and product differentiation.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      The ALKConnect Patient Insights Network (www.alkconnect.com) will be a patient-focused registry that directly collects information from patients living with ALK+ NSCLC. Patients meeting study criteria will be enrolled in the online survey over a 2-year period. Inclusion criteria are US, adult, English-speaking patients with ALK+ NSCLC providing written, informed consent, internet access, and willing to answer regular e-surveys. Retrospective and cross-sectional ‘real-world’ data that will be collected include demographics, clinical characteristics including ALK+ NSCLC disease history and status, comorbidities, past and present treatment experiences and outcomes, quality of life, patient preferences, healthcare resource use, and work productivity. Supplementary data may be collected through uploading of electronic medical records.

      4c3880bb027f159e801041b1021e88e8 Result

      The ALKConnect Patient Insights Network will systematically characterize the natural history of ALK+ NSCLC and its treatment and the overall impact on patients. The data collected will be reported descriptively for the population overall and by subgroups of interest (e.g., age, sex) where sample sizes permit. The associations between treatment history/disease status and patient-reported outcomes including symptom severity, HRQoL (e.g., responses to the MD Anderson Symptom Inventory lung cancer module [MDASI-LC]), healthcare resource use, and work productivity will be analyzed. Longitudinal trends will be evaluated to enable a better understanding of the impact of ALK+ NSCLC over time. All de-identified information gathered from ALKConnect will be shared with the ALK+ NSCLC community, including patients, caregivers, healthcare professionals, advocacy organizations, and fellow researchers.

      8eea62084ca7e541d918e823422bd82e Conclusion

      We present ALKConnect, an online ALK+ NSCLC patient insights network directly from patients. ALKConnect will provide patients with ALK+ NSCLC opportunities to share their treatment experiences, disease burden, HRQoL, and preferences. Through dissemination to scientific and medical communities, researchers will gain first-hand insights into ALK+ NSCLC patients’ experiences of care, and into opportunities for addressing patients’ unmet needs.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    P3.15 - Treatment in the Real World - Support, Survivorship, Systems Research (Not CME Accredited Session) (ID 981)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 1
    • Moderators:
    • Coordinates: 9/26/2018, 12:00 - 13:30, Exhibit Hall
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      P3.15-03 - Capturing the Patient Experience for the Treatment of EGFR Exon 20 Mutations in Non-Small Cell Lung Cancer (ID 12301)

      12:00 - 13:30  |  Author(s): Gabriella Salvatore

      • Abstract
      • Slides

      Background

      Non-small cell lung cancer (NSCLC) accounts for 80−85% of new lung cancer cases, which presents as metastatic disease 40−50% of the time. The prevalence of NSCLC patients with a mutation in the epidermal growth factor receptor (EGFR) varies by ethnicity, ranging from 15−50%, and EGFR exon 20 insertion mutations specifically account for 7−12% of all EGFR mutations.

      Health-related quality of life (HRQOL) was widely used, as generic measures may lack the sensitivity required to demonstrate clinical change related to new therapies. Assessments of disease-specific patient-reported outcomes (PROs) play an important role in clinical trials to evaluate the benefits of new treatments on HRQOL and in making treatment decisions for patients. This study aimed to better understand the overall symptom experience and HRQOL impact from the perspective of NSCLC EGFR exon 20 patients to evaluate the effectiveness of new treatments.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      A targeted literature review was conducted in Embase and Medline (2007−2017) to identify PROs used in previous NSCLC studies for evidence of content coverage. Interviews with expert clinicians were conducted to explore the clinical perspective on treatment and observed patient experience. Following approval from an independent review board, semi-structured qualitative interviews were conducted with NSCLC patients identified through the International Cancer Advocacy Network.

      4c3880bb027f159e801041b1021e88e8 Result

      Five oncologists were interviewed, reporting a wide range of NSCLC symptoms, notably shortness of breath, chest pain, bone/other pain, and substantial emotional impacts. Ten patient interviews were conducted (median age 55 [42−83] years; 60% female, 90% EGFR exon 20 insertions, median disease duration 1.8 [<1−6] years, 60% self-reported brain metastases). The most frequently reported disease related symptoms included fatigue (90%), pain (70%), shortness of breath (70%), cough (60%), weakness (30%), phlegm/congestion (30%), and hemoptysis (20%). Symptoms indicative of brain metastases included issues with vision and headaches (both 30%), speaking (20%), and balance (10%). All patients mentioned experiencing a psychological or emotional impact, with 60% describing worry/anxiety around treatment, the future, or finances. Patients also described experiencing negative impacts on daily activities, including household chores and self-care (60%), work (50%), social activities (50%), and family life (40%).

      8eea62084ca7e541d918e823422bd82e Conclusion

      Incorporation of the patient voice provided valuable in-depth insight on the NSCLC patient experience. Symptom and HRQOL impact concepts identified will inform the iterative development of a conceptual disease model. Results show the significant social, emotional, and physical impact on patients’ lives, which fill an important gap and help to inform treatment decision making.

      6f8b794f3246b0c1e1780bb4d4d5dc53

      Only Active Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login or select "Add to Cart" and proceed to checkout.