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Ivy Beth Elkins



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    MA07 - Improving Care for People with Lung Cancer: Decision Making, Survivorship, and New Challenges During COVID-19 (ID 167)

    • Event: WCLC 2020
    • Type: Mini Oral
    • Track: Patient Advocacy
    • Presentations: 1
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      MA07.01 - How Lung Cancer Patients Perceive their Treating Doctors and Engage in medical decision-making: Lessons from Project PRIORITY (ID 3764)

      15:30 - 16:30  |  Author(s): Ivy Beth Elkins

      • Abstract
      • Presentation
      • Slides

      Introduction

      Understanding how patients with lung cancer perceive their healthcare teams and engage in medical decision-making is critical in guiding patient-centered care. As part of a larger study (Project PRIORITY), we sought to understand the current behavior and feelings of members of the EGFR Resisters community. Project PRIORITY is a patient-founded and patient-driven longitudinal study aimed at understanding unmet needs of the global EGFR-positive lung cancer community.

      Methods

      We asked members of the EGFR Resisters community about three decision-making styles: patient-led (patients make decisions either with little or no input from physicians or make decisions after considering their physicians’ opinions), shared (patients and physicians make decisions together), and doctor-led (physicians make decisions after considering patient opinions or make decisions with little or no input from patients) (Figure). Perception of healthcare team was analyzed using Likert scales (questions included in Figure). Differences in the strategies/variables across demographic characteristics were identified through Chi-square tests.

      Results

      figure for abstract 1.png

      Responses were collected from 394 participants with an average age of 55.5 years. Three-fourths of the participants were females.

      Shared decision-making: Most patients engage in shared decision-making with their physicians. However, participants from outside the US (41%) and those diagnosed within the past 2 years (46.7%) (p<0.05 by X2). are less likely to engage in shared decision-making (p<0.05 by X2). Notably, 7-in-10 participants said that they prefer a shared decision-making approach if provided the option. The remaining 30% preferred a patient-led or a doctor-led decision-making style.

      Perceptions of healthcare team: Participants from outside the US are less likely to have positive perceptions of their healthcare teams, as evidenced by their lower comfort levels with asking questions regarding lung cancer care and their physicians understanding their needs. Years since diagnosis impacted some of the attributes of perception of healthcare team (Figure). Interestingly, no differences in gender were noted.

      Conclusion

      Both decision-making style and perception of healthcare team differ across participants in the highly engaged EGFR Resisters lung cancer community. Specifically, physician-led decision-making style and less comfort level with physician was are associated patients diagnosed within 2 years who are early in their disease navigation and also seen in participants from outside the US. It is important to note that patient preferences about decision-making and perceptions of their healthcare team are heterogeneous, indicating no patient is the same. As healthcare delivery becomes more patient-centered, greater attention to individual decision-making style will be needed.

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    P30 - Palliative and Supportive Care (ID 163)

    • Event: WCLC 2020
    • Type: Posters
    • Track: Palliative and Supportive Care
    • Presentations: 1
    • Moderators:
    • Coordinates: 1/28/2021, 00:00 - 00:00, ePoster Hall
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      P30.05 - Perception of Palliative Care and Prognostic Awareness of Lung Cancer Treatment in an Oncogene-Driven Lung Cancer Community (ID 3762)

      00:00 - 00:00  |  Presenting Author(s): Ivy Beth Elkins

      • Abstract
      • Presentation
      • Slides

      Introduction

      Project PRIORITY (Patient Reported Initiative On Resistance, Incidence, Treatment studY) is a patient-founded longitudinal study aimed at understanding unmet needs of the global EGFR-positive lung cancer (LC) community. Here we present reports of perceptions and use of palliative care and prognostic awareness among Project PRIORITY participants.

      Methods

      Members of the EGFR+ LC community answered an online survey that included questions about their perception of palliative care and their prognostic awareness (measured using the likelihood of cure, the importance and helpfulness of knowing about prognosis, and the primary goal of cancer care). Descriptive statistics were used to evaluate the frequencies, means, and standard deviations of study variables. Relationships between categorical variables were measured using X2 analysis.

      Results

      figure for abstract 2.png

      One hundred forty-nine participants who responded; 80% were female, 77% were stage IV, 55.5% had received more than one line of therapy (LOT), and 54% were aged 60 years or less.

      Perception of Palliative Care: Participants reported awareness of the concepts of symptom management, palliative care, and supportive care (Figure), yet most of the patients (65%) had not accessed palliative care services for themselves. Younger patients were even less likely to access palliative care (54%). After provision with a definition, there was a significant improvement in the mean favorability rating of palliative care. Sixty percent would consider palliative care for themselves, while 73% would recommend palliative care for a loved one. Older participants were very likely to use (69%) or recommend (79%) palliative care vs. 44% and 59%, respectively, in younger patients. Participants with 2 or more LOTs were very likely to use (71%) or recommend (81%) palliative care vs. 58% and 65% respectively, in patients on 1 LOT [p<0.05 by X2 for comparisons].

      Prognostic Awareness: Sixty-one percent of stage IV participants perceive that their cancer will not likely be cured. Patients across all stages most often noted that their treatment goal from treatment was to extend their life (78%) (Figure). However, younger participants were more likely to report that their treatment goal was cure (20%, compared to 5% in older participants.)

      Conclusion

      Patients with EGFR+ LC, especially younger patients, make limited use of palliative care despite awareness of the concept and belief that it would help loved ones. Understanding of treatment goals varied by age, with younger patients more likely to perceive their treatment as curative. These findings underscore the need for patient-centered communication and assessment of supportive care needs of the relatively young LC community.

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