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Jennifer C. King
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: 2
- Now Available
MA22.01 - Lung Cancer Patients’ Unique Values and Preferences Lead to Clinical Trial Preferences (Now Available) (ID 2639)
15:45 - 17:15 | Author(s): Jennifer C. King
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.
MA22.10 - The Role of Stigma in Differential Care for Lung Cancer Patients: A Decade of Patient and Oncologist Attitudes (Now Available) (ID 2540)
15:45 - 17:15 | Presenting Author(s): Jennifer C. King
The presence of lung cancer stigma is well documented (Chapple et al, 2004; Chambers et al, 2012; Marlow et al, 2015) and has been shown to impact the care and treatment of lung cancer survivors (Tod et al. 2008; Carter-Harris et al 2014). In 2008, a large survey of over 200 patients, 200 oncologists, and 1000 members of the general population revealed that most participants felt that lung cancer was principally caused by external factors, that it was preventable, and that lung cancer patients were at least partly to blame for their illness (Weiss et al. 2014; Weiss et al. 2017). The last decade has brought significant changes in the treatment paradigm for lung cancer but it was unknown if the perceptions that affect the care of lung cancer patients have changed.Method
1001 members of the general public, 208 patients with lung cancer, and 205 oncologists who treat lung cancer were surveyed with the identical survey instrument from 2008 survey along with 5-15 additional questions at the end. The survey was carried out by phone and online between June 6 and July 26, 2018. Statistical analysis was performed comparing 2008 and 2018 datasets using paired t-tests if normally distributed or Mann-Whitney U tests for continuous data and Chi-squared or Fisher’s exact test for categorical data.Result
In 2018, significantly more oncologists feel they have adequate treatment options for metastatic lung cancer (67% vs 36%, p<.001) and the majority of patients report being satisfied with their medical care (87%) and treatment options (71%).
Nevertheless, significantly more patients felt that there was a stigma associated with having lung cancer (70% vs. 54%, p<.0001) and that society treats them differently (63% vs 45%, p<.0001). There was a non-significant increase in oncologists indicating that there is a stigma associated with lung cancer (68% in 2018 vs 60% in 2008) and that patients blame themselves (67% vs 57%).
Despite the improvements in lung cancer treatment over the past decade, stigma is still evident in care for those with lung cancer. Similar to 2008, 57% of oncologists indicated that patients with different types of cancer were thought about, approached, or handled differently and lung cancer patients were most frequently cited. In 2018, more patients reported that patients with lung cancer are treated differently by doctors and nurses (40% vs. 26%, p=.01). For both groups, the most common differential treatment referenced was “received less sympathy from medical staff.”Conclusion
After a decade of research progress in lung cancer, stigma surrounding the disease remains a critical problem even in a healthcare setting. Patients are perceiving stigma at higher levels and oncologists are not reporting any improvement. This work underscores the need to address stigma with proactive multilevel approaches including the need for medical providers to practice empathic communication.
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
- Coordinates: 9/09/2019, 10:15 - 18:15, Exhibit Hall
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): Jennifer C. King
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.