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Andrew Ciupek



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    MA22 - Partnering with Patients to Understand Stigma, Disparities and Values Leading to Improved Lung Cancer Care (ID 154)

    • Event: WCLC 2019
    • Type: Mini Oral Session
    • Track: Advocacy
    • Presentations: 1
    • Now Available
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      MA22.01 - Lung Cancer Patients’ Unique Values and Preferences Lead to Clinical Trial Preferences (Now Available) (ID 2639)

      15:45 - 17:15  |  Presenting Author(s): Andrew Ciupek

      • Abstract
      • Presentation
      • Slides

      Background

      Only about 5% of cancer patients participate in clinical trials. We previously conducted a survey of U.S. lung cancer patients and found that only 22% reported discussing clinical trials with their oncologist at the time of making treatment decisions. We hypothesize these low rates of trial discussion and participation may be due in part to current clinical trial designs not reflecting unique values and preferences of lung cancer patients that differ from other non-cancer conditions.

      Method

      Utilizing an online survey inquiring about clinical trial attitudes of patients with several different clinical diagnoses in the United States, we chose to compare a group of lung cancer patients (LC group) to patients diagnosed with a non-cancerous condition (chronic allergies or asthma) (AA group). 229 participants in the LC group and 367 in the AA group were asked to indicate the personal impact of several information sources for finding out about clinical trials and several potential motivators for clinical trial participation.

      Result

      The LC group reported the doctor’s office as their main information source for clinical trials, while the AA group indicated advertisements as their primary source for finding out about trials. In terms of motivation to join trials, 60% of the LC group said having their doctor’s support for joining a given trial was very important to them (only 33% of the AA group said so). Being paid for participation was reported as being motivating by 69% of the AA group versus only 23% of the LC group. When asked about what they valued when looking for a clinical trial, the LC group said extending quality and length of life and receiving access to otherwise unavailable therapy options were very important. The AA group placed much less importance on these same values.

      Conclusion

      We should consider the unique ways lung cancer patients seek information and what they value when designing a strategy to recruit to or educate about a clinical trial. Effective, tailored strategies may include increasing the use of providers as primary trial educators and focusing outreach surrounding trials on lung cancer patient motivators that differ from those with other diagnoses.

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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  |  Presenting Author(s): Andrew Ciupek

      • 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.