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Jennifer C King
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MA 08 - Supportive Care and Communication (ID 669)
- Event: WCLC 2017
- Type: Mini Oral
- Track: Nursing/Palliative Care/Ethics
- Presentations: 1
- Moderators:E. Esposito-Nguyen, John McPhelim
- Coordinates: 10/17/2017, 11:00 - 12:30, Room 511 + 512
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MA 08.06 - Assessment to Programming: Responding to the Needs of the US Lung Cancer Community (ID 9394)
11:35 - 11:40 | Author(s): Jennifer C King
- Abstract
- Presentation
Background:
Research shows people diagnosed with lung cancer have greater unmet supportive care, physical and emotional needs compared to those diagnosed with other cancers. Much of this research is older and primarily focused on small numbers of newly diagnosed patients. Other research has focused on the relative lack of treatment options and does not address practical and psychosocial needs.
Method:
To more fully understand the current unmet needs of lung cancer survivors, an online survey was distributed between 11/9/2015 and 2/8/2016. Of 820 respondents, 471 were lung cancer patients/survivors with 349 loved ones. Queried on treatment histories, respondents were asked to identify the most prevalent and problematic symptoms and side effects experienced during treatment, shortly after treatment ended and at 5+ years post-diagnosis. They were also asked which were most problematic during each time period.
Result:
The survey had an overall 72% completion rate with 21% of survivor-respondents indicating a diagnosis 5+ years prior. Patients/survivors rated anxiety, fatigue and shortness of breath as most challenging in the immediate, post-treatment, and long-term. During treatment, gastrointestinal issues including constipation, diarrhea and nausea were also highly problematic. All groups reported physical effects were significantly more problematic during treatment but deemed emotional effects more difficult to manage post-treatment and in the long-term. In open-ended questions, nearly 25% of respondents indicated they received inadequate information/assistance to manage physical and emotional reactions, both during and after treatment. Only 27% of respondents had a discussion about palliative care with just over 20% having received it. The survey affirmed that assistance to manage lung cancer’s symptoms and treatment side effects is an unmet need in the lung cancer community. In response, a four-part educational series, including webinars and accompanying print materials, was developed. The series is the only to focus specifically on lung cancer and helps participants understand the causes of the top four reported symptoms and side effects, including potential medical interventions and holistic, practical tips that can used immediately.
Conclusion:
Those diagnosed with lung cancer are the experts and we can only understand their unmet needs by asking them. This large, extensive survey provided insight into their needs during, immediately after and long after treatment. Our initial four-part webinar series is only the beginning--through our results and querying webinar participants, we are developing additional educational programming to help those diagnosed with lung cancer and their loved ones understand and manage their specific disease and treatment-related challenges.
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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MS 27 - Engaging Patients in Research: Best Practices (ID 549)
- Event: WCLC 2017
- Type: Mini Symposium
- Track: Patient Advocacy
- Presentations: 1
- Moderators:S. Shilo, J. Kerr
- Coordinates: 10/18/2017, 14:30 - 16:15, Room 311 + 312
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MS 27.02 - LungMATCH: Developing a Patient-Friendly, Personalized Education and Navigation Program to Increase Participation in Clinical Research (ID 7770)
14:50 - 15:10 | Presenting Author(s): Jennifer C King
- Abstract
- Presentation
Abstract:
It is widely recognized that patient participation in clinical research is a significant challenge, with only less than 5% of adult patients with cancer entering on clinical trials. This issue is becoming exacerbated in the field of lung cancer. With the advent of new therapeutic options and strategies accompanied by endless potential combinations of these approaches, there are more important trials and research studies that need to be done than patients available to participate in them. To address this problem, Lung Cancer Alliance developed a unique, innovative program known as LungMATCH that combines direct patient services with increasing enrollment to clinical studies. LungMATCH provides patient education and navigation through the changing treatment landscape in lung cancer while informing and educating patients about research opportunities that they can discuss with their treatment team. There are multiple programs under the LungMATCH umbrella. These include a molecular testing service where patients can initiate the process of molecular testing themselves, a novel patient-friendly online clinical trial matching widget, and phone-based personalized treatment and trial specialists who are knowledgeable about the state of lung cancer today and the many clinical trials available. These specialists can empower a patient or caregiver to have an informed conversation with their treatment team. Notably, while providing the community with much-needed navigation services, the program also aims to accelerate research discoveries through patient enrollment on a registry protocol for the molecular testing component and increasing patient accrual to clinical trials. In the first six months since launch, there have been barriers to overcome and lessons learned but many successes. Over 50 patients have been referred to the molecular testing program. More than 10 times as many users are viewing clinical trial search results compared to a previous clinical trial matching tool. Patients who speak with the trial navigators report having conversations about clinical trials with their healthcare providers much more frequently than other callers. These initial data indicate that the program is filling a need in our community and can help provide support to patients and caregivers while accelerating lung cancer research.
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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P1.01 - Advanced NSCLC (ID 757)
- Event: WCLC 2017
- Type: Poster Session with Presenters Present
- Track: Advanced NSCLC
- Presentations: 1
- Moderators:
- Coordinates: 10/16/2017, 09:30 - 16:00, Exhibit Hall (Hall B + C)
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P1.01-036 - Identifying and Addressing Gaps in Molecular Testing for Patients with Lung Cancer (ID 9391)
09:30 - 09:30 | 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. Yet previous studies indicate that not all patients with NSCLC are receiving testing, even for actionable mutations in EGFR, ALK, and ROS. We hypothesized that rates of molecular testing would be low for patients calling a community HelpLine and that we could potentially increase testing rates with one-on-one caller education and providing free precision medicine services.
Method:
Caller statistics were collected on the toll-free Lung Cancer Alliance (LCA) HelpLine from Sept 1, 2016 – May 31, 2017. Recruitment to the LungMATCH molecular testing program began Nov 10, 2017. Patients are recruited through conversations on the LCA HelpLine, then entered into Perthera Cancer Analysis (PCA) through consent into an IRB-approved registry protocol. PCA includes tissue acquisition, multi-omic molecular profiling, and medical review of testing results and clinical and treatment history. PCA reports are returned to both treating physicians and patients. Data is being collected longitudinally on treatment decisions, patient outcomes including progression-free and overall survival, and patient experience.
Result:
Data from the LCA Helpline identified a gap in molecular testing. 44% (100/228) of patients who were asked if they received any kind of molecular testing replied "No". Of 46 patients who were tested and knew the results, patients indicated changes in EGFR (25), PD-L1 (10), ALK (5), KRAS (4), MET(2), BRAF, and RET. Most of these alterations are potentially actionable. From Nov 10, 2016 – May 31, 2016, 63 interested patients were referred for PCA. Sixteen patients consented and eight more are currently in the consent process. Reasons for non-consent include: doctor refusal, initiation of testing at the treating institution, concern about financial implications, and seven deaths. Ten patients are actively undergoing PCA and six have received completed PCA reports. Of those six, three patients reported that treatment decisions were made using the molecular testing information. Updated results will be presented.
Conclusion:
Caller data indicate that patients with lung cancer are not receiving molecular testing in accordance to guidelines. To address this problem, we introduced a program through a nonprofit-corporate partnership that navigates patients and their physicians through a comprehensive precision therapy program. This type of program is feasible and there is patient interest.
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P1.11 - Patient Advocacy (ID 697)
- Event: WCLC 2017
- Type: Poster Session with Presenters Present
- Track: Patient Advocacy
- Presentations: 1
- Moderators:
- Coordinates: 10/16/2017, 09:30 - 16:00, Exhibit Hall (Hall B + C)
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P1.11-003 - A Personalized Navigation Program to Increase Clinical Trial Participation of Lung Cancer Patients (ID 8219)
09:30 - 09:30 | Presenting Author(s): Jennifer C King
- Abstract
Background:
Only three to five percent of newly diagnosed cancer patients participate in clinical trials (Lara PN, 2001). We previously conducted a survey of U.S. lung cancer patients and found only 22% reported discussing clinical trial participation with their oncologist at the time of making treatment decisions (Fenton L, 2009). We hypothesized that a personalized navigation program could increase the amount of lung cancer patients initiating trial conversations with their oncologists and ultimately trial participation. Here we describe initial results from a pilot program, offering personalized, telephone-based clinical trial support to lung cancer patients.
Method:
Callers to Lung Cancer Alliance's 1-800 support line between 8/1/2016 and 6/7/2017 were asked if they had considered clinical trial participation and willing callers were referred to a clinical trial navigator for further discussion about clinical trial options. Navigators provided basic clinical trial education and a personalized list of clinical trial matches based on discussion. 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.
Result:
36 callers were referred to a navigator during the pilot. Subsequently, 23 patients (64%) reported discussing clinical trials with their oncologist. Six of these approached a specific trial, with one enrolling, four being excluded due to not meeting eligibility criteria, and one not enrolling due to the trial being closed. Three others choose standard of care treatment over trials and one declined treatment. Two had doctors advise against trials in favor of other options. Three had disease progression preventing further trial consideration and one passed away. Seven of the 23 were still discussing trials at the end of follow up. Six of the initially referred callers chose not to discuss trials with their oncologist. The majority of these (five) reported not feeling a need to discuss trials due to having stable disease on a current treatment. The remaining caller reported feeling a lack of doctor support as reason for choosing not to discuss. Seven of the 36 initial callers were lost to follow-up.
Conclusion:
Given that 64% of the patients in the pilot program reported discussing trials with their oncologist, a personalized support program may represent an effective means of increasing clinical trial participation among lung cancer patients. This program will be expanded to include more participants and gather more information on barriers to clinical trial participation.
