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C.L. Dégi
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MA 04 - Advocacy: Listen to the Patients (ID 655)
- Event: WCLC 2017
- Type: Mini Oral
- Track: Patient Advocacy
- Presentations: 11
- Moderators:Rudolf M Huber, C.L. Dégi
- Coordinates: 10/16/2017, 11:00 - 12:30, Room 313 + 314
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MA 04.01 - Prospective Comparative Evaluation of Patient and Caregiver Perspectives on a Multidisciplinary Model of Lung Cancer Care (ID 10279)
11:00 - 11:05 | Presenting Author(s): Matthew P Smeltzer | Author(s): K.D. Ward, F.E. Rugless, N.R. Faris, M.A. Ray, B. Jackson, C. Foust, A. Patel, M. Meadows, N. Boateng, K. Roark, F. Crossley, G. Oliver, L. McHugh, W. Hastings, O. Osborne, J. Osborne, T. Ill, M. Ill, R.S. Signore, R. Fox, E.T. Robbins, Raymond U. Osarogiagbon
- Abstract
- Presentation
Background:
Coordinated multidisciplinary (MD) lung cancer care, with all key specialists concurrently providing early input to develop a consensus care plan in collaboration with patients and their caregivers, may improve patient-centered outcomes over the usual serial care (SC) model, but needs rigorous evaluation.
Method:
Prospective, longitudinal study comparing newly-diagnosed lung cancer patients receiving MD vs. SC within the same US healthcare system. The MD intervention was implemented from lung cancer care initiation until definitive treatment decision. After that, both cohorts of patients received their actual cancer treatments within the same environments. At baseline and 6 months, patients completed treatment-related satisfaction measures from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) and the Functional Assessment of Cancer Therapy- Lung (FACT-L) quality of life instrument. All measures were coded so that larger scores are better. Time-specific comparisons were made with the Wilcoxon-Mann-Whitney test and changes from baseline to 6 months were compared between MD vs. SC patients in mixed linear models.
Result:
The 463 patients who participated (156 MD, 307 SC) were similar in sex and health insurance. MD cohort was slightly older (69 v 66 years), with more racial minorities (37% v 29%). Patients receiving MD care reported greater satisfaction with the treatment plan (p=0.0266) and overall quality of care (p<0.0010) at 6 months. Additionally, satisfaction with the treatment plan showed greater improvement over time for MD vs. SC (p-value for trend=0.0046). SC patients showed more improvement in satisfaction with overall care than MD patients, but did not reach the level of satisfaction of MD patients at 6 months (p-value for trend=0.0018). Caregivers of MD patients perceived receiving better quality of care compared to other lung cancer patients than caregivers of SC patients (p=0.0049). Caregiver satisfaction did not differ between MD and SC in the communication measures or overall quality, and did not have significant differences in the trend over time. Patient reported Health-Related Quality of Life (HRQOL) improved from baseline to 6 months for the lung cancer-specific scale compared with no change with SC (p-value for trend= 0.0334). Other HRQOL scales were similar between groups
Conclusion:
Compared with SC patients, MD patients experienced improved lung cancer-specific HRQOL and greater satisfaction with both treatment plan and quality of care received. MD patients’ caregivers were more likely than SC patients’ caregivers to think their care was better than that of other patients.
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MA 04.02 - Assessing the Psychosocial Needs of Newly Diagnosed NSCLC Patients: Identifying the Population Most At-Risk (ID 8345)
11:05 - 11:10 | Presenting Author(s): Bonnie Leung | Author(s): H. Naik, J. Laskin, J. Wu, R. Mackenzie, A. Bates, C. Ho
- Abstract
- Presentation
Background:
The Psychosocial Screen for Cancer (PSSCAN-R) questionnaire and the Canadian Problem Checklist (CPC) are validated screening tools used to identify the psychosocial needs of patients with cancer. The questionnaire identifies at-risk patients requiring timely psychosocial intervention and the CPC comprises of patient-reported support needs in 6 psychosocial domains. The study goal was to review reported needs of patients with NSCLC to facilitate the development of programs and resources specific to those identified as at-risk for psychosocial distress.
Method:
All patients with NSCLC referred to BC Cancer Agency centres from 2011-2015, who completed a prospective PSSCAN-R and CPC questionnaire at the time of their first visit, were included in the study. Demographics and baseline disease characteristics were collected retrospectively. Univariate analysis using the Chi-squared test and Fisher’s exact test were used to compare patient groups based on gender, age and stage of disease.
Result:
4313 patients completed the PSSCAN-R and CPC questionnaire. The median age was 70 (21-99), with 50% female and 51% of patients with stage IV disease. 29% of patients live alone with 13% having lost their spouse/partner. However, 93% of patients report regular contact with friends/relatives and 85% have someone who can provide assistance with daily tasks (shopping, cooking, transportation). Female patients, patients aged 65 or younger, and those with advanced disease were more likely to report significantly higher levels of anxiety and depression, and reported higher number of needs on the CPC. Figure 1
Conclusion:
Newly diagnosed patients with NSCLC report clinically higher levels of anxiety and depression and have greater number of concerns in multiple psychosocial domains. Resources should be developed for lung cancer patients based on their care needs with careful consideration of patients' age, gender and disease stage to optimally support their psychosocial needs during treatment and follow up.
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MA 04.04 - Discussant - MA 04.01, MA 04.02, MA 04.03 (ID 10862)
11:10 - 11:25 | Presenting Author(s): Kathy Weber
- Abstract
- Presentation
Abstract not provided
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MA 04.05 - The Impact of the Meso Foundation on Advocacy Efforts for Funding Mesothelioma Research (ID 7462)
11:25 - 11:30 | Presenting Author(s): M. Kotizan | Author(s): Gleneara Elizabeth Bates, J. Mostel, Mary Hesdorffer
- Abstract
- Presentation
Background:
The Mesothelioma Applied Research Foundation is the nonprofit collaboration of patients and families, physicians, advocates, and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma. The Meso Foundation’s Advocacy Program objective is to obtain federal funding for mesothelioma research.
Method:
An analysis was performed of the Meso Foundation’s advocacy efforts and grant funding from years 2000- 2015.
Result:
The Meso Foundation has funded 103 projects from 8 countries for a total awarded amount of 9.8 million dollars. From 2000- 2015, the Meso Foundation grant program has funded research that has produced over 240 publications in peer reviewed journals. As a direct result of Foundation advocacy, the Department of Defense has awarded a total of $12.4 million to mesothelioma research since 2008. The Meso Foundation’s grant program has funded the basic science research that helped lay the groundwork for several mesothelioma clinical trials. A few of the more notable trials include the measles virus and the WTI Vaccine. Several of the proposals funded by Meso Foundation grants have extended to global levels through presentations at international conferences including but not limited to International Association for the Study of Lung Cancer (IASLC), American Society of Clinical Oncology (ASCO), and American Association for Cancer Research (AACR).
Conclusion:
Through actively engaging members of congress, the Meso Foundation has successfully advocated for increased funding for mesothelioma research. The Meso Foundation is committed to leveraging the knowledge we gain from our own research, as well as discoveries made by our collaborations with academic institutions and industry partners to work toward the development of innovative treatments and care platforms for mesothelioma patients and their families.
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MA 04.06 - Developing a Lung Cancer Clinical Quality Registry Framework to Collect Longitudinal Patient-Reported Outcomes (ID 8197)
11:30 - 11:35 | Presenting Author(s): Mary Duffy | Author(s): N. Moloczij, K. Gough, David L Ball, Ben J Solomon, L. Mileshkin, M. Krishnasamy
- Abstract
- Presentation
Background:
When captured by psychometrically-sound patient-reported outcomes measures (PROMs), patients’ appraisals of their symptoms, quality of life and functional status can provide powerful data to better inform clinicians about the impact of health conditions and the consequences of medical care. Reviewing and reporting on integrated PROMs alongside clinical data may translate to health service improvements and efficiencies. There are, however, many challenges including the need to find sustainable and cost-efficient methods for the routine collection of PROMs across the whole patient journey. This two-phase study set out to develop a lung cancer clinical quality registry framework to collect longitudinal patient-reported outcome measures. Phase 1 focused on the development of the data collection framework and phase 2 sees a 12-month implementation and mixed-method evaluation of the feasibility of implementing the framework. We will report on development of the framework and provide preliminary results on the implementation phase.
Method:
The development phase utilised a formative evaluation method to decide on essential aspects of the PROMs framework. Specifically, a Delphi process was employed to seek consensus on PROMs to administer and the schedule of assessments, with a specific focus on clinical relevance and feasibility of administration. The first Delphi round consisted of individual interviews with lung cancer clinical experts to generate a list of domains to be included in the PROMs. In the second round, aggregated results were presented to the panel and domains of interest were considered alongside PROMs meeting minimum measurement standards. Then, four patients previously treated for lung cancer were invited to provide feedback on the content of PROMs and data collection methods.
Result:
From Delphi findings, it was determined that the EORTC QLQ-C30 and the lung cancer-specific module (QLQ LC13) would be administered at baseline and two, six and 12 months after baseline, and a brief social isolation measure (PROMIS) would be administered at baseline only. A clearly defined subset of patients about to commence chemo-radiation treatment for lung cancer was chosen for the implementation phase and commenced on October 31 2016. To date, 74% (14/19) of eligible patients have been recruited thus far. Preliminary data indicate high adherence to baseline assessments (100%). Adherence is much lower at two months (50%), with non-adherence frequently due to side effects or ill health (38%).
Conclusion:
Identifying and deciding which PROMs to collect, the overall purpose of PROMs collection, data completeness and utility requires careful consideration and evaluation to determine framework sustainability.
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MA 04.07 - Understanding Patient Barriers to Utilization of Low Dose CT Lung Cancer Screening (ID 9624)
11:35 - 11:40 | Presenting Author(s): Cherie Parungo Erkmen | Author(s): F. Dako
- Abstract
- Presentation
Background:
Despite evidence that lung cancer disproportionately affects minority populations, there is a paucity of data describing the impact of lung cancer screening. Results of NLST may not be generalizable to all populations given that 91% of the participants were Caucasians. Further study of lung cancer screening in a diversity of racial and ethnic groups is a necessary step in the implementation of lung cancer screening. Before underrepresented populations can be screened, community perceptions about lung cancer screening must be explored and barriers to screening must be identified. The purpose of our study was to identify potentially correctable barriers to obtaining LDCT for lung cancer screening in a diverse, but predominantly African American population.
Method:
We developed a questionnaire consisting of 22 items. Five questions assessed patient demographics including socioeconomic status and insurance coverage. Two questions assessed patient access and utilization of health care. Three questions assessed smoking history and prevalence in interpersonal relationships. One questions assessed patient concern about lung cancer. Two questions measured patient knowledge about lung cancer. One question addressed patient willingness to go to a doctor’s appointment to learn more about lung cancer screening. One question elicited whether LDCT had been mentioned by a healthcare provider. Six questions assessed awareness and knowledge about LDCT lung cancer screening. One question addressed reasons for non-adherence to appointments.
Result:
The questionnare was complete by 100 patients. Almost all of our patients reported having health insurance and a primary care doctor (96%). 50% of patients are current or former smokers. 83% are current or former smokers or have friends and/or family members who are heavy/long time smokers. 90% of patients knew that smoking is the most common cause of lung cancer. 56% of patients know that lung cancer can be treated successfully at least sometimes. 81% of patients reported to be at least somewhat concerned that they or someone they know can die of lung cancer. 87% of patients are willing to go to a doctor’s appointment to learn more about lung cancer screening. 100 % of patients reported to have not heard about LDCT from their doctors. The average score was 2/6 (33%) on items accessing knowledge about lung cancer screening. Cost was the most frequently reported reason (52%) for nonadherence to appointments.
Conclusion:
Our study was able to identify potentially correctable barriers to utilization of low dose CT lung cancer screening such a lack of primary care support and perceived cost.
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MA 04.08 - Discussant - MA 04.05, MA 04.06, MA 04.07 (ID 10863)
11:40 - 11:55 | Presenting Author(s): Andrea Katalin Borondy Kitts
- Abstract
- Presentation
Abstract not provided
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MA 04.09 - A Study on the Damage of Passive Smoking to Japanese Lung Cancer Patients (ID 8789)
11:55 - 12:00 | Presenting Author(s): Kazuo Hasegawa | Author(s): T. Yamaoka, Satoko Kono, H. Nakahara
- Abstract
- Presentation
Background:
Japan’s measures to prevent passive smoking are considered to be among the world’s worst. Creating smoke-free environments is an urgent task for Japan as it prepares to host the 2020 Tokyo Olympics and Paralympics Games. In spring of 2017, discussions on a draft bill to strengthen measures against passive smoking were stalled due to opposition from within the ruling party. One lawmaker remarked that “(Cancer patients) don’t have to work”, indicating that patients can choose their occupation and avoid secondhand smoke as they wish. Against this backdrop, the Japan Lung Cancer Alliance conducted a survey on damage by secondhand smoke to cancer patients. Based on the survey’ result, this study aims to shed light on the problems experienced by lung cancer patients including the impact of secondhand smoke on their employment.
Method:
For 5 days from 28 May to 1 June 2017, a survey by questionnaires was conducted on lung cancer patients. The announcement of the survey was made by ten patient advocacy groups.
Result:
There were 231 responses, among which valid responses were 215. 91 percent of the respondents considered passive smoking “unpleasant” due to fears or anxieties for recurrence of lung cancer and/or hatred. It was found that among those respondents who were employed at the time of the survey, about 31 percent had been exposed to secondhand smoke at their workplace, and 4.2 percent had quitted their job. Not only at the work place, 6.2 percent of the respondents were exposed to the secondhand smoke at home, event after they were diagnosed as lung cancer.
Conclusion:
It is understood that working cancer patients worry about recurrence of cancer and/or hatred. Moreover, the experiences of those lung cancer patients who had left their job because of passive smoking reveal a lack of the freedom to choose their occupation. The urgent countermeasure is also required to prevent the passive smoking at home. Japan’s delay in adopting measures against passive smoking appears be related to an insufficient level of understanding in the society about difficulties faced by cancer patients. It is hoped that this study will draw attention to the damage by passive smoking to lung cancer patients and foster international support for the advocacy of legislation enacting stricter measures.
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MA 04.10 - An Assessment of the Willingness to Provide Serial Bio-Specimens: Experience from an Irish Tertiary Cancer Centre (ID 10076)
12:00 - 12:05 | Presenting Author(s): Anne-Marie Baird | Author(s): N.M. Keegan, Martin P Barr, S. Fishleder, A.F. Idris, E. Harrold, P. O'Kelly, E. Duff, S. Lim, M. O'Donnell, D.J. Gallagher, C. Grant, J. Kennedy, D.M. O'Donnell, S. Sukor, C.P. O'Brien, Stephen P Finn, S. Cuffe
- Abstract
- Presentation
Background:
The rising imperative to improve our understanding of cancer heterogeneity and individualised drug response has led to a high demand for biopsy material. With improvements in technologies, there is now a move away from more traditional tissue based sampling to liquid based biopsies. ‘Liquid biopsies’ provide a non-invasive means for molecularly profiling patients with cancer, thus benefiting patients and clinicians in terms of treatment choice and shared decision-making. We assessed the willingness of patients to undergo repeated tissue and/or ‘liquid’ based sampling.
Method:
Detailed questionnaires, assessing patients’ perceptions of, and willingness to undergo serial biopsies were distributed to ambulatory patients at a tertiary cancer referral centre (St. James’s Hospital, Dublin). Multivariate analysis was performed using ordinal logistic regression analysis.
Result:
The questionnaire response rate was 97% (247/255). Respondents were primarily female (73%), aged between 51-70 yrs (51%), with breast (39%), colorectal (16%), oesophagogastric (13%), and lung cancer (12%). Of those that responded, repeat biopsy of an easily accessible lesion was acceptable to 203 (82%) patients if recommended by an oncologist. However this reduced to 102 (41%) patients, if the purpose was solely for clinical trial. Acceptability decreased to 168 (68%) and 81 (33%) patients respectively for more invasive biopsies. Additionally, 79 (32%) patients were willing to undergo additional biopsy for research purposes only, with 54 (21%) patients uncertain of its utility in research. Lower performance status (OR=0.44, p=0.04) and the belief that biopsy was unimportant for research (OR=0.74, p=0.04) negatively impacted on willingness to undergo biopsy, while a prior invasive biopsy increased acceptance (OR=1.02, p=0.02). In terms of blood sampling, 82% of patients would consent to repeated blood sampling over the course of their treatment, with >5 samples considered acceptable by 51.5% of patients. Patients with lung cancer had 3.38 greater odds (OR=3.38, p=0.047) of consenting to a repeated blood sample for purely research purposes (compared to any other type of cancer); however their willingness to undergo repeat biopsy was similar to that of other patients (OR=1.99, p=0.129). Data analysis is currently on-going.
Conclusion:
Patients with cancer are willing to participate in serial sampling of blood and urine but are less likely to consent to repeated tissue biopsies. Patients with lung cancer were particularly amenable to repeated blood sampling compared to patients with other cancer types. This is significant given the recent data supporting the use of ‘liquid’ biopsy for real-time monitoring of resistance mutations and treatment response dynamics in patients with lung cancer.
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MA 04.11 - A Comprehensive Vision to Reduce Lung Cancer Stigma: Changing Cultural Perspectives on Lung Cancer (ID 9507)
12:05 - 12:10 | Presenting Author(s): Angela Meredith Criswell | Author(s): Maureen Rigney, J.L. Studts
- Abstract
- Presentation
Background:
Lung cancer stigma has wide-reaching effects and impacts treatment, quality of life, survival, societal attitudes, research funding, and advocacy efforts. Those affected by lung cancer commonly feel hopeless, isolated, reluctant to share their diagnosis in addition to feelings of guilt, shame, anxiety and depression. Stigma responses can hinder information seeking information related to treatment options and psychosocial support and, tragically, can cause delays in diagnosis and even refusal of treatment. Major pan-cancer organizations, those dedicated to all lung diseases as well as lung cancer-specific organizations conduct awareness raising campaigns designed to confront lung cancer stigma, all working in some measure to create a more compassionate and empathic environment for those at-risk and diagnosed. These efforts have not been coordinated and to date, no known comprehensive vision to address lung cancer stigma in its entirety has been developed.
Method:
HIV/AIDS and mental health advocates have devoted extensive efforts to developing coordinated stigma reduction plans. While not always applicable, their approaches can inform our efforts in lung cancer. To develop a comprehensive framework to address lung cancer stigma, a synthesis of relevant strategies used in other disease-states, a review of lung cancer stigma literature and exploration of the efforts of organizations and individuals from around the world was conducted.
Result:
Awareness-raising, myth-busting and public health advocacy are featured prominently in other stigma-reduction plans. Lung cancer, like HIV/AIDS and other smoking-related cancers, must also address nihilism from medical professionals and work to ensure non-judgmental discussions and compassionate treatment environments that explore appropriate treatment options become the norm. Founded on seven key areas of opportunity, the plan includes multiple areas of impact that need to be addressed. Included are suggested remediation methods and real-world examples from all over the globe to illustrate creative ways lung cancer stigma reduction can be approached. This comprehensive, multi-level, multi-pronged vision allows individuals, systems and organizations to find points of convergence and work collaboratively on addressing the stigma so closely associated with lung cancer.
Conclusion:
Through a comprehensive approach, lung cancer stigma can be reduced and ultimately eliminated. To initiate a global conversation and better unite the lung cancer community, we offer this unifying strategy to address lung cancer stigma. Through the menu of stigma-reduction strategies, we hope to spark conversation, collaboration, and convergence. Dedicated medical professionals, survivors, loved ones, advocacy organizations and others can use the vision to apply appropriate strategies in their regions/countries and work collaboratively toward this all-important goal.
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MA 04.12 - Discussant - MA 04.09, MA 04.10, MA 04.11 (ID 10864)
12:10 - 12:25 | Presenting Author(s): Sita Andarini
- Abstract
- Presentation
Abstract not provided
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