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Jennifer C King
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MA07 - Towards Survivorship: The Landscape, Supports and Barriers (ID 904)
- Event: WCLC 2018
- Type: Mini Oral Abstract Session
- Track: Advocacy
- Presentations: 3
- Moderators:
- Coordinates: 9/24/2018, 13:30 - 15:00, Room 205 AC
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MA07.01 - No Longer Outliers: Understanding the Needs of Long-Term Lung Cancer Survivors (ID 12955)
13:30 - 13:35 | Author(s): Jennifer C King
- Abstract
- Presentation
Background
Lung cancer is the leading cause of cancer death in most developed and developing countries. But people do survive, sometimes for many years. Those diagnosed with lung cancer experience higher levels of distress and have greater unmet physical and emotional needs compared with other types of cancer. But what of long-term survivors?
Globally, The Cancer Atlas reported an estimated 1,878,000 people were living with lung cancer in 2012. With the introduction of screening and rapid treatment advancements, that number is only expected to increase. Are we prepared to meet the long term and late effects of lung cancer? First, we must better understand the experiences and identified needs of long-term survivors.
a9ded1e5ce5d75814730bb4caaf49419 Method
820 people responded to a 120 question online survey that was distributed via social media and targeted outreach. 471 identified as lung cancer patients/survivors and 349 as loved ones. 21% of survivor-respondents indicated they had been diagnosed 5+ years prior.
Queried on treatment and smoking histories, long-term survivors identified their most prevalent and problematic symptoms and side effects experienced during treatment, shortly after treatment ended and at 5+ years post-diagnosis. They also answered questions regarding treatment decision-making and palliative care discussions and provision of post-treatment survivorship plans.
4c3880bb027f159e801041b1021e88e8 Result
74% of long-term survivors had surgery, 43% had experienced a recurrence and 5% had participated in a clinical trial. None were current smokers.
The most common (and problematic) late and long term symptoms and side effects were shortness of breath (39%), fatigue (28%) and anxiety (24%). Memory problems were also rated as common (27%).
Long-term survivors indicated that during treatment, physical side effects were most problematic but post-treatment and long-term, emotional effects were more difficult. Financial issues were also more problematic 5+ years after treatment compared with other time periods. Both discussions of palliative care and provision of survivorship care plans were rare.
8eea62084ca7e541d918e823422bd82e Conclusion
Long-term lung cancer survivors were once considered ouliers but today those diagnosed are increasingly living five years and longer. How do the late and long-term physical effects of lung cancer and its treatments differ from survivors of other types of cancer? How do long-term survivors manage stigma and survivor guilt? What physical and emotional support and services do they need? This survey provides initial insights into the physical. emotional and financial effects of living longer with lung cancer but more research is needed to allow us to more fully understand how we can support our long-term survivors.
6f8b794f3246b0c1e1780bb4d4d5dc53Only 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, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
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MA07.08 - Discussant - MA 07.05, MA 07.06, MA 07.07 (ID 14597)
14:15 - 14:30 | Presenting Author(s): Jennifer C King
- Abstract
- Presentation
Abstract not provided
Only 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, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
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MA07.10 - Utilizing a Personalized Navigation Program to Identify Barriers and Increase Clinical Trial Participation Among Lung Cancer Patients (ID 13482)
14:35 - 14:40 | Author(s): Jennifer C King
- Abstract
- Presentation
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 hypothesized that a personalized navigation program could both increase rates of trial discussion and identify barriers to participation among lung cancer patients.
a9ded1e5ce5d75814730bb4caaf49419 Method
We asked callers to Lung Cancer Alliance's 1-800 support line if they had considered clinical trial participation and referred willing callers to a navigator for further discussion. Navigators provided basic clinical trial education and a personalized list of trial matches. Patients were encouraged to discuss these trials with their treating oncologist. Navigators then regularly followed up with participants, via email or phone, at two to four-week intervals, to offer further support and collect outcomes information.
4c3880bb027f159e801041b1021e88e8 Result
We referred sixty callers to a navigator. Only 43% of callers reported a prior clinical trials conversation with their provider. Patients who had not started treatment or were on first-line treatment reported lower discussion rates (30%) than those on later treatment lines (60%). Among patients with follow up, 13 of 20 patients who had not discussed trials with their provider reported doing so after navigation. Ten of eleven patients that had a previous trial conversation initiated an additional one. Primary reasons given for not talking discussing after navigation were having stable disease on a current treatment or waiting for a clinical result. Ten patients reported contacting a trial. Primary reasons for not contacting a trial after discussion were disease progression, choosing a standard of care alternative, or waiting for a clinical result. Four patients have enrolled on a trial. Two patients were determined ineligible for a trial they approached for not meeting listed eligibility criteria and two for reasons not appearing in public trial information.
8eea62084ca7e541d918e823422bd82e Conclusion
We identified barriers throughout the clinical trials consideration and enrollment process. One set of barriers was related to care coordination, as exemplified by low rates of trial discussion during early stages of treatment and patient reports of delayed trial consideration when currently receiving treatment or waiting on a clinical result. Communication of trial information was another area presenting barriers, as exemplified by exclusion of patients from trials for reasons not readily apparent from public trial information. Improving integration of trial discussion during care and ensuring availability of accurate, updated trial information may be essential to increase trial participation.
6f8b794f3246b0c1e1780bb4d4d5dc53Only 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, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
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MA10 - Considerations in Immunotherapy / Real World (ID 911)
- Event: WCLC 2018
- Type: Mini Oral Abstract Session
- Track: Advanced NSCLC
- Presentations: 1
- Moderators:
- Coordinates: 9/25/2018, 10:30 - 12:00, Room 105
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MA10.10 - Lung Cancer Stigma: A Ten-Year View of Patient, Provider, and Public Attitudes About Lung Cancer. (ID 13413)
11:35 - 11:40 | Presenting Author(s): Jennifer C King
- Abstract
- Presentation
Background
The presence of lung cancer stigma is well documented (Chapple, 2004; Chambers, 2012; Marlow, 2015) and impacts the care and treatment of lung cancer survivors (Tod, 2008; Carter-Harris, 2014). In 2008, a large survey of patients, oncologists, and general public revealed that most participants felt lung cancer was principally caused by external factors, was preventable, and lung cancer patients were partly to blame for their illness (Weiss 2014; 2017). We replicated the survey to understand whether perceptions have changed over the last decade.
a9ded1e5ce5d75814730bb4caaf49419 Method
1001 members of the general public, 208 lung cancer patients, and 205 oncologists who treat lung cancer were surveyed with the identical instrument as 2008 plus 3-11 questions at the end including Cataldo Lung Cancer Stigma Scale (Cataldo, 2011) strongest-loaded items for the patient survey. The survey was administered by phone and online during summer 2018.
4c3880bb027f159e801041b1021e88e8 Result
General lung cancer awareness has significantly improved in a decade with 94% of the public reporting familiarity with lung cancer, every segment reporting increased media visibility (65%, 78%, 85% for public, patients, and oncologists, respectively), and patients reporting significantly increased use of advocacy organizations (39% vs 18%, p<.05). Additionally, significantly more oncologists reported having adequate treatment options to prolong patients’ lives (52% vs 31%, p<.05) and most patients reported satisfaction with medical care (87%) and treatment options (71%).
Despite these advances, stigma remains a critical problem. In 2018, significantly more of the public believed lung cancer patients are viewed/treated differently than other cancer patients (37% vs 31%, p<.05) and a similar proportion (56%) felt patients are partly to blame for their illness. Oncologists continue to believe there is stigma associated with lung cancer (68%) although more felt stigma was lower for never-smokers. More oncologists indicated patients blame themselves (67% vs 57%). Patients reported significant increases (p<.05) in presence of stigma associated with lung cancer (70% vs. 54%), lung cancer patients being treated differently by society (63% vs. 45%), having personally been treated different by society (43% vs 25%), and loved ones would be more supportive if they had a different type of cancer (25% vs. 11%).
8eea62084ca7e541d918e823422bd82e Conclusion
After a decade of lung cancer research progress, results indicate considerably elevated awareness. Unfortunately, disease stigma remains. Interestingly, stigma is reported more frequently by lung cancer patients and may be felt more acutely, perhaps due to increased awareness and empowerment. This work underscores the need to address stigma with proactive multilevel approaches (Hamann, 2018).
6f8b794f3246b0c1e1780bb4d4d5dc53Only 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, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
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P2.15 - Treatment in the Real World - Support, Survivorship, Systems Research (Not CME Accredited Session) (ID 964)
- Event: WCLC 2018
- Type: Poster Viewing in the Exhibit Hall
- Track:
- Presentations: 1
- Moderators:
- Coordinates: 9/25/2018, 16:45 - 18:00, Exhibit Hall
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P2.15-13 - Implementation of a Democratized Approach to Multi-Omic Molecular Profiling Via the LungMATCH Program. (ID 13329)
16:45 - 18:00 | Presenting Author(s): Jennifer C King
- Abstract
Background
For metastatic non-small cell lung cancer (NSCLC) guidelines include molecular testing for actionable biomarkers and recommend broad profile testing. Previous studies indicate that many patients with NSCLC are not receiving testing, even for actionable changes in EGFR, ALK, and ROS, BRAF, and PD-L1. There are widespread gaps in the community setting and Lung Cancer Alliance data shows that less than 50% of callers to the patient HelpLine have had molecular testing on their lung cancer.
a9ded1e5ce5d75814730bb4caaf49419 Method
The LungMATCH molecular testing program is operationalized via a turn-key precision medicine (PM) operation system. This approach provides a standardized workflow from tissue acquisition through multi-omic molecular profiling, treatment history integration, and AI-based computational analysis to produce a treatment decision support tool of therapeutic options matched to the patient. Longitudinal outcome is collected on every patient along with treatment decisions and patient experience.
4c3880bb027f159e801041b1021e88e8 Result
The majority of the patient referrals (72%) came from non-academic centers across a wide geographic region that covered nearly 75% of the United States (36/50 states). Barriers to signing informed consent and completing biopsy have been identified including: patients in poor health, cost concerns, unsupportive physicians, and patient loyalty to the physician (discomfort with advocating for testing). For patients who have received reports, 72% (12/17) had actionable genomic alterations that indicated either a standard of care agent or a clinical trial. An additional 82% (9/11) had actionable proteomic findings and 31% (5/16) had high tumor mutational burden.
8eea62084ca7e541d918e823422bd82e Conclusion
There is broad patient interest in accessing PM information but still many barriers to widespread adoption. The LungMATCH program provides a turn-key solution to help provide a facile means to “democratize” access to PM information unbound by geography or community/academic setting. Importantly, the majority of patients who received a completed profiling report had actionable molecular alterations, which underscores the potential impact of testing. Treatment decisions and patient outcomes continue to be followed.
6f8b794f3246b0c1e1780bb4d4d5dc53
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P3.11 - Screening and Early Detection (Not CME Accredited Session) (ID 977)
- 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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P3.11-04 - Trends and Barriers in Lung Cancer Screening Implementation Across the United States. (ID 13925)
12:00 - 13:30 | Presenting Author(s): Jennifer C King
- Abstract
Background
In 2010, the National Lung Screening Trial was halted after showing a 20% reduction in mortality for high risk individuals when three years of annual lung cancer screening was performed by low dose computed tomography(NEJM, 2011). Many questions remained about whether screening could be properly implemented in non-academic, community settings. Lung Cancer Alliance developed a National Framework for Excellence in Lung Cancer Screening and Continuum of Care in 2012 and began a nationwide network dedicated to responsible lung cancer screening. The Screening Center of Excellence (SCOE) designation requires a center to ensure shared decision-making, comply with best practice standards, work with a multidisciplinary care team, deliver or refer for smoking cessation, provide results in a timely manner, and meet technical specifications set by the American College of Radiology. Our aim is to promote high-quality, responsible lung cancer screening throughout the United States, including in community settings where most lung cancer is diagnosed.
a9ded1e5ce5d75814730bb4caaf49419 Method
From 2012 through 2017, over 500 centers were designated as SCOEs. These centers represented 42 states and more than 60% were from community/non-academic centers. High-risk individuals who come to the Lung Cancer Alliance website or contact the organization by phone to find a screening center are directed to a SCOE. A data collection effort in 2017, being repeated in 2018, collected comprehensive information about the state of lung cancer screening and care at the SCOEs. Nearly 70% of SCOEs responded to the 2017 survey.
4c3880bb027f159e801041b1021e88e8 Result
The SCOE program data shows that screening is being performed widely across the United States, including in non-academic centers. For centers who were able to provide numbers of screenings performed and diagnoses, we identified a clear trend in diagnosis of Stage 1 lung cancer, indicating these screenings are able to find lung cancer early. We also identified a number of implementation challenges around referral patterns, insurance and billing, and determining appropriate risk criteria. Rates of adherence to both annual scans and recommended follow-up varied widely across different institutions indicating a key area of focus for future implementation research.
8eea62084ca7e541d918e823422bd82e Conclusion
We have shown that a patient advocacy group working with medical professionals can help deliver high quality care to a broad population. Data collection from the SCOEs provides a snapshot of the state of lung cancer screening in the United States that underscores the success of screening and the importance of early detection but also identifies barriers in implementation that still need to be addressed.
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