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MA24 - Initiatives to Improve Health in Lung Cancer Patients (ID 354)
- Event: WCLC 2019
- Type: Mini Oral Session
- Track: Advocacy
- Presentations: 12
- Now Available
- Moderators:Merel N. Mountain, Nicoleta Mitrea
- Coordinates: 9/10/2019, 14:30 - 16:00, Melbourne (1991)
Lung Cancer Europe (LuCE) is the voice of people impacted by lung cancer at the European level. LuCE aims to increase knowledge of lung cancer, and provide a platform to raise awareness regarding disparities in detection, diagnosis, treatment and care across Europe. This study was undertaken to gain a better insight in to the clinical trial experience from a patient perspective, and improve our understanding of patients’ awareness and attitudes towards clinical trials.Method
Surveys and qualitative interview questions were designed based on a review of relevant literature and policy sources. Online surveys were constructed and shared with lung cancer advocates (n=13; covering 12 different countries) and patients with lung cancer (n=262; covering 15 European countries). Qualitative interviews were also undertaken with 15 individuals, covering the medical community, representatives from patient advocate organisations and the pharmaceutical industry.Result
The majority of patient respondents were aged between 56-65 years of age (37%), with women accounting for 70% of total respondents. Most of those who took part resided in Poland (19.5%), Italy (18.7%), Denmark (9.9%) and Spain (9.2%). A number of concerning figures emerged from the data. Overall, 50% did not fully understand what a clinical trial was, and 22% of respondents had never heard of clinical trials. Only 11% of those surveyed had participated, or were actively participating in a lung cancer clinical trial. Over 50% of these respondents stated that their trial experience was positive. The Internet was the primary source used by patients to find trial information (89%), however only 10% stated that they could always find the information they needed. This is critical, as the more information patients obtained, the more willing they were to participate in clinical trials. Overall 80% wanted to find out more about clinical trials, and 75% believed that it would be beneficial for patients to work together with researchers in the clinical trial development process. Key areas identified by this research included difficulties in cross-border access, language barriers, lack of accurate accessible information, lack of awareness by patients and clinicians, and disparities in access across Europe.Conclusion
A number of barriers were identified in accessing lung cancer clinical trials across Europe and within individual countries. These obstacles are multifaceted and exist at a protocol, clinical and patient level. The lung cancer community must work together to overcome these barriers and ensure access to clinical trials for all people impacted by lung cancer.
MA24.02 - Developing Regional Activity for a National Charity: The Lung Cancer Canada Experience (Now Available) (ID 962)
Lung Cancer Canada (LCC) is the only national charity solely committed to the most common cancer in Canada. Its mission is to raise awareness; to advocate; and to provide support and educational resources for lung cancer patients and caregivers. At a strategic planning event the LCC Board held in 2017, the goal of building regional hubs was identified - to deliver the charities mandate within local contexts.Method
A group of key stakeholders (patients, caregivers, fundraisers, social workers, nurses and physicians) met to identify local priorities. Specific programs were developed, with other initiatives flowing from that initial effort. Here we describe the group's achievements.
From the initial stakeholder meeting two prime opportunities were identified.
1. Create a support group for women with lung cancer.
2. Take advantage of being in the national capital to more purposefully engage with Federal politicians.
In addition to the stakeholder meeting, subsequent social gatherings of key individuals helped build momentum.
Through partnership with a local charity (Ottawa Regional Cancer Foundation), marketing through LCC, recruitment through the cancer centre, and program development from a senior psychosocial oncology social worker, the support group was formed for an initial 12 week period, and has now grown to an established permanent fixture. The benefits have been previously reported, but out of this group further local initiatives have included: regular patient-led lung cancer information sessions in the cancer centre; a regional patient summit for all lung cancer patients to learn latest research, patient testimonies and psychosocial challenges; the funding and initiation of an LCC podcast series.
Concurrently more individuals and families have become engaged in fundraising for lung cancer: events including quiz nights, makeovers, golf days, wine raffles and more, which in addition to raising funds also builds awareness and builds the local community.
These individuals have partnered with physicians to stimulate the second goal, initiating regular meetings with municipal, provincial, federal and senatorial politicians, in addition to military leadership and indigenous groups. This itself helped the national organization to hone the advocacy message we share (lung cancer awareness, lung cancer screening, access to treatments, and the establishment of a national registry).Conclusion
Through identification of local champions who effectively work together, many initiatives have successfully developed. With funding and support from LCC, the charity’s mandate is being delivered within the local context. This serves as a model for other centres across Canada to develop local programs.
MA24.03 - Factors Impacting Patients’ Worries (Accessing Treatment, Treatment Toxicity, & Emotional Burden) Associated with Lung Cancer Treatments (Now Available) (ID 2589)
Understanding patient experiences with lung cancer can guide research, treatment, and policy decisions. Conducted as part of a larger study (Project Transform) that aimed to quantified patient experiences, we sought to study the primary concerns of lung cancer patients and their caregivers and to determine what demographic and clinical factors impact these worries.Method
Lung-cancer worries were identified from patient interviews and the literature. A novel an instrument assessing 13 potential worries on a 3-point importance scale was incorporated as part a national survey of lung cancer patients (inclusive of all types/stages of disease) and caregivers recruited through LUNGevity Foundation. Factor analyses was used to identify key constructs among the 13 worries. We then explored variation in the standardized factor scores across demographic and clinical indicators collected in the survey.Result
Of the 426 participants in the survey, there were 385 patients and 41 caregivers. The average age of respondents was 58.9 years, 54% earned less than $75,000 per year, and 67.6% had completed college. Three factors were identified associated with worrying: 1) “accessing treatments” (incorporating knowledge, communication, access); 2) “treatment toxicity” (incorporating both side-effects and financial impact); and 3) “emotional burden” (including worries about dying, emotional toll, and being a burden), with Cronbach’s alphas of 0.89, 0.73, and 0.74 respectively. Worries about accessing treatment were lower among NSCLC (P=0.006), presence of MET mutations (P = 0.027) and those not currently receiving therapy (P=0.033). Worries about treatment toxicity were higher among non-white (P<0.001), non-retired (P<0.001), those earning less than $75,000 (P<0.001), younger patients (P<0.001), and those with ALK (P=0.026) or HER2 (P=0.041) mutations. Worries about treatment toxicity were lower among patients on Medicare or Medicaid during treatment (P = 0.023) and NSCLC patients (P=0.018). Worries about the emotional burden of treatment were lower among those >=60 years (P=0.002) and those who are retired (P=0.021) and higher among those having surgery (P=0.039).
Table 1: Marginal effects of patient factors on standardized worry scores
Age >= 60
Hispanic, Latino, or Spanish
Primary Language - Spanish
College or professional degree
Household Income < $75,000
Population < 2,500
Chronic conditions as diagnosis
Medicare or Medicaid
Participated in a clinical trial
More than 2 lines of treatment
No current treatment
Notes: Standard errors in parentheses, * p<0.05, ** p<0.01, ***p<0.001Conclusion
Patients worry to differing extents about accessing treatment, treatment toxicity, and the emotional burden of lung cancer, yet caregivers and patients (on the whole) have similar worries. Lung cancer researchers, clinicians, and policymakers should make decisions in ways that address the heterogeneous experience of patients. Patients worries vary across a confluence of demographic, disease, and treatment factors, hence greater attention to the individual needs of the patient is needed.
MA24.04 - Discussant - MA24.01, MA24.02, MA24.03 (Now Available) (ID 3820)
14:30 - 16:00 | Presenting Author(s): Deb Whippen
Abstract not provided
Despite diagnostic and treatment progress in lung cancer, outcomes remain poor and costs remain high. Prevalence and mortality rates in Europe are higher than the global average and five-year survival rates stand at a mere 11.2% for men and 13.9% for women. The Economist Intelligence Unit is conducting research to identify the impact of policy on lung cancer incidence and outcomes, sponsored by MSD. Recommendations stemming from our research will support countries to build improved systemic responses for lung cancer.Method
Our research centres on twelve countries: Austria, Belgium, Finland, Germany, Greece, Netherlands, Norway, Poland, Romania, Spain, Sweden, and the UK. Following an initial literature review using evidence from internationally-recognised sources (e.g. Globocan, OECD, and proprietary Economist Intelligence Unit sources), we organised our thinking into five domains. This is operationalised by quantitative and qualitative indicators to provide insight into how each country addresses cancer planning and guideline usage as well as how strategic thinking impacts behaviour and access.
At a meeting with leading European experts, we presented our initial findings and validated our framework. The next step was to populate our scorecard to compare policy and practice in each country. Individual country profiles were developed from our findings, examining local barriers to progress in terms of service delivery, systems, access, financing and governance. Workshops were then held in each country. Meeting with a range of leading clinicians, patient organisations, and other key stakeholders ensured a detailed examination of our preliminary findings and, most importantly, enabled us to obtain further information on conditions within each country. This nuanced information provides us with a clearer grasp on approaches to the provision of lung cancer care to a greater degree than we could have obtained from desk research alone.Result
Preliminary results indicate patches of good practice, yet no country scores highly across all of our measurements and each country has several opportunities for improvement. For example, all but one country has a national cancer control plan: of eleven plans, nine are over five years old which means that they are not taking account of recent oncological innovations. Often, a country’s national lung cancer clinical guidelines lack details regarding fast-tracking suspected patients for diagnosis as well as referral pathways for moving a patient to secondary/tertiary care, supportive/palliative care, shared decision-making, and provision of psychological support in specific time periods. Cancer registries exist in each country, yet clinicians report that clinically-focused cancer registries could provide useful information on patient care. Finally, reimbursement for all four commonly used biomarkers for lung cancer is available in only five countries.Conclusion
Significant room for improvement in lung cancer policy exists across all of the countries and domains we have studied. Our country-based workshops have ensured that our research focuses on the most important opportunities for improving the delivery of lung cancer care from the standpoint of each country. We are now entering the policy development phase of our research where our goal is to assist policy-makers to improve care for people living with lung cancer in Europe.
The Global Lung Cancer Coalition is the international voice of lung cancer patients and is committed to improving disease outcomes for all. The Coalition's work includes activities to support lung cancer advocates in campaigning for actions that will improve research, information, treatment, and care for people living with lung cancer.
Significant variations exist both between and within different countries in lung cancer incidence, mortality and survival. Advocates can use evidence of these variations to make the case for legislative, policy or regulatory change.
In 2014 the GLCC brought together multiple, comparable, statistical sources about lung cancer’s impact and outcomes in different nations in the first Global Lung Cancer E-Atlas. For the first time, national lung cancer data became easily accessible in a single place online.
In 2019, a new edition was published incorporating more recent global data, breakdowns by gender and age, and features to make it easier for advocates to use.Method
Incidence and mortality data were drawn from GLOBOCAN 2018, which provides estimates, by age and gender, for 185 countries of the world.
Survival data were drawn from: CONCORD-2, covering 67 countries; the EUROCARE-5 study, covering 29 European countries; and the International Cancer Benchmarking Partnership (ICBP), comprising Australia, Canada, Denmark, Norway, Sweden and the United Kingdom.
The E-Atlas also details whether countries operate a cancer plan, have national cancer registries in place, or have implemented the WHO Framework Convention on Tobacco Control.
GLCC members were invited to validate their country’s data. Any more recent national data identified was included alongside the data from other sources.Result
The Lung Cancer E-Atlas is publicly accessible on the GLCC’s website for anyone in the world to use.
Data can be compared, turned into graphs and infographics, and shared via social media. It can also be downloaded ready for use in presentations.
Clinicians have used the data in presentations to national and regional congresses. Patient advocacy groups are using it to support their engagement with national policymakers and media.Conclusion
Feedback from GLCC members confirms that the E-Atlas continues to be an essential resource in their campaigning and advocacy. Policymakers respond positively to being able to see how their country’s national data compares to that of other countries.
The GLCC is keen to increase the profile of the E-Atlas so that any lung cancer advocate – whether a clinician, patient, carer, researcher, advocacy group or journalist – is aware of it and able to use it.
The GLCC is also keen to receive feedback on national data for inclusion or suggestions for further development.
MA24.07 - Impact of Radiologist Recommendations on Timeliness of Lung Cancer Referral: Baseline Data to Guide a Quality Improvement Initiative (Now Available) (ID 828)
Lung cancer (LC) diagnostic pathways are typically initiated following suspicious radiographic imaging. In southeastern Ontario, Canada, we identified delays from first thoracic imaging suspicious for LC to referral for evaluation at our regional LC rapid assessment clinic, the Lung Diagnostic Assessment Program (LDAP). Given that delays in diagnosis of LC are associated with worse patient outcomes, we sought to characterize local processes to guide Quality Improvement (QI) initiatives.Method
We retrospectively reviewed all patients referred to the LDAP between January and October 2018. Collected data included dates of: first imaging suspicious for LC, first CT chest (if different from first suspicious imaging), LDAP referral, LDAP assessment, and details regarding Radiologist recommendations in the report. Data are reported as mean days (± standard error); unpaired t-tests were used to assess for significance.Result
Of 558 patients referred to the LDAP, 509 (91.2%) patients had a CT chest performed prior to LDAP referral. Of these, 110 (21.6%) had a CT chest report issuing a specific Radiologist recommendation for LDAP referral. When such a recommendation was made, time from CT chest to LDAP referral was significantly faster than if no recommendation was made (6.9 versus 12.9 days, p=0.017), as was time from CT Chest to LDAP assessment (21.4 versus 25.6 days, p=0.026). Of all patients with a Radiologist recommended LDAP referral, 38 (34.5%) were not assessed in the LDAP for reasons including: patient followed by the LDAP, a Respirologist, or an Oncologist, inpatient status, or patient refusing assessment. Data are presented in Figure 1.
We identified that a Radiologist recommendation for LDAP referral leads to significantly faster patient referral and assessment for evaluation of suspected LC. A QI initiative is underway, consisting of knowledge sharing and regional standardization of radiologist reporting recommendations for imaging suspicious for LC in order to expedite LDAP referral.
MA24.08 - Discussant - MA24.05, MA24.06, MA24.07 (Now Available) (ID 3821)
14:30 - 16:00 | Presenting Author(s): Merel N. Mountain
Abstract not provided
Lung cancer stigma, arising from the causative relationship between smoking and lung cancer, can result in those with a lung cancer diagnosis being seen by themselves and others as responsible for and even deserving of their condition. Lung cancer stigma is linked to adverse outcomes for patients, including decreased quality of life and depression. Most studies have focused on stigma in patients with advanced lung cancer, whose experiences may differ from earlier stage, surgical patients with better prognosis. The objective of this study is to establish a baseline of stigma related experiences for patients presenting with early stage lung cancer. The overarching goal is to assist in determining appropriate interventions to decrease harmful stigma for patients with lung cancer.Method
This study is a descriptive cross-sectional design using the 25-item previously validated Lung Cancer Stigma Inventory (LCSI). The LCSI was self-administered by patients with newly diagnosed lung cancer at a tertiary referral thoracic surgical clinic to quantitatively measure their experience of lung cancer stigma. Statistical comparisons were performed with Student’s t-test.Result
128 patients were approached to participate and 53 completed the LCSI (response rate= 41.4%), 33 were women. All had resected early stage lung cancer except one patient staged pIIIA (I=41, II=11). 38 patients (71.7%) met the established threshold of a total LCSI score of 37.5, indicating a clinically meaningful level of stigma. Stigma was experienced predominantly on the Internalized Stigma subscale (mean 2.64/5), whereas scores on the Constrained Disclosure and Perceived Stigma subscales were lower (mean 1.84/5, 1.66/5). There was a trend towards higher overall stigma scores in current and former smokers compared to never smokers (mean 53.9 vs 39.8, p=0.12) There was no difference in stigma experience based on gender or stage, surgical approach or use of adjuvant chemotherapy.Conclusion
A surgical population of patients with early stage lung cancer experienced lung cancer stigma at a high rate, and at a level similar to previously studied populations with more advanced disease. Respondents experienced more internal stigma than stigma stemming from society or others. Exploratory analysis of this study’s results have informed the development of a further study, currently underway, using patient interviews to better understand patients’ experiences of lung cancer stigma, which may help to identify potential interventions to decrease lung cancer stigma and its impacts.
MA24.10 - Estimation of Deaths Due to Lack of Access to Immunotherapy for Brazilian Patients Diagnosed with Advanced NSCLC Without Any Driver Mutation (ID 2967)
Lung cancer is a major cause of cancer worldwide. Despite efforts to curtail risk factors such as tobacco consumption, it remains both common and lethal. More recently novel targeted therapies and the development of immunotherapy provided a substantial increase in the expected survival of patients diagnosed with advanced lung cancer. Nonetheless, the lack of access to these medications, especially in low and middle-income countries, is a trending concern.
Brazil is considered to be a middle-income country and its citizens have access to a universal healthcare system (Sistema Único de Saúde – SUS) – fully funded by the government. Around 75% of the population rely exclusively on this public system when treating their diseases. Many high-cost drugs, such as immunotherapy and TKI’s, are not provided due to budget constraints.
This study has the goal of estimating the impact in premature lives lost in the Brazilian population due to lack of access to the best currently available therapy for patients with advanced non-small cell lung cancer (NSCLC) without driver mutations.Method
Firstly, we searched for data regarding the incidence of lung cancer in the Brazilian population using INCA’s (Brazilian National Cancer Institute) database, demographic data from the Brazilian Government and compiled staging and histologic data from different private and public oncologic centers. For analytic reasons, we compared the incidence data with the ones observed in the American Surveillance, Epidemiology, and End Results (SEER).
Using survival data from the pivotal phase 3 studies for immunotherapy in NSCLC (PACIFIC, Keynote 189 and 407) we estimated the expected total number of patients alive one year after diagnosed with stage III or IV NSCLC (excluding those with driver mutations) considering they had received the best treatment available according to the NCCN guidelines. This number was compared with the expected survival for patients receiving the standard treatment in the Brazilian SUS (chemoradiation followed by observation for stage III NSCLC and palliative Carboplatin + Paclitaxel for stage IV NSCLC without driver mutations).Result
After compiling all data of interest, we estimated that 2.332 premature deaths would occur in Brazilian patients with advanced NSCLC one year after diagnosis, exclusively due to lack of access to immunotherapy. Comparing Brazilian incidence data with the American data from SEER, this number may actually be underestimated and can reach up to 11.193 premature deaths in a single year.Conclusion
The lack of access to immunotherapy is a major concern for countries in development and this can lead to an enormous impact on survival of patients with lung cancer. Further studies are needed to best estimate the economic impact and provide data to help decide when to adopt new technologies and drugs to treat these patients. Strategies may rapidly be implemented in order to avoid further unnecessary premature deaths of NSCLC patients.
MA24.11 - A Project to Control Passive Smoking by Lung Cancer Patients "Don't Smoke Near Me! Don't Be Like Me!" (Now Available) (ID 2483)
14:30 - 16:00 | Presenting Author(s): Kazuo Hasegawa | Author(s): Hiroko Saito, FUsayo Miyake, Chigusa Nakamura, Yuko Tanaka, Tomomi Ito, Seiko Inaba, Chikako Endo, Koji Onishi, Masayo Onishi, Nobuyuki Kishimoto, Yuko Komatsu, Isamu Tanaka, Makiko Tanaka, Takehiko Hatsuda
According to a survey of patient group members (n = 215, 2017), 31% of lung cancer patients who continue to work were exposed to passive smoking at workplaces.
Once Japanese tobacco industry used to be a national monopoly, so Japan is one of the countries where a ban on indoor smoking has not been realized. Although education on smoke prevention in elementary and junior high schools tells the fact that smoking is one of the risks for lung cancer, it is unknown that lung cancer patients are living frightened of cancer relapse, especially with the fear of being exposed of passive smoking.
Lung cancer patients encourage highly dependent smokers who cannot stop smoking despite they have colleagues or families suffering from lung cancer to visit smoking cessation clinics.Method
Intervention to close persons is difficult. In order to overcome the difficulties, we select ambassadors from each patient group. Then we provide training on education, action guidelines and tool development, have them participate in tool development, and have them become mentors when scaling up. The state of the activity is published on the Internet, and we spread media interview invitations in parallel. We let families, colleagues, community members, professionals, medical professionals, media and politicians know that lung cancer patients are frightened of passive smoking.
The activities already done are as follows.
-Granted Global Bridge grant of tobacco control personnel development department in Mayo Clinic, USA
・ Ambassador briefing session was held twice. (Kobe and Tokyo)
・ Selected 13 ambassadors from 11 lung cancer patient group and held 5 workshops.
・ Planned communication strategies
・ Communication tactics currently developingResult
[Activity (project) evaluation]
・ Won 13 ambassadors from all over Japan
・ No withdrawal of the ambassador
・ One of the ambassadors changed job to be in charge of tobacco control in a public administration.
・ One of the ambassadors was appointed as a member of patient information evaluation committee of National Cancer Center Japan.Conclusion
・ Completion of Tool
・ Hold briefing session to member in each patient group
・ Campaign implementation
・ Campaign evaluation
MA24.12 - Discussant - MA24.09, MA24.10, MA24.11 (Now Available) (ID 3822)
14:30 - 16:00 | Presenting Author(s): Bonnie Addario
Abstract not provided
IBS28 - Managing Side Effects for Better Quality of Life (Ticketed Session) (ID 59)
- Event: WCLC 2019
- Type: Interactive Breakfast Session
- Track: Advocacy
- Presentations: 1
- Now Available
- Coordinates: 9/10/2019, 07:00 - 08:00, Vancouver (2003)
IBS28.02 - Palliative Care for Improved Quality of Life; It’s Not End of Life Care (Hospice) (Now Available) (ID 3403)
07:00 - 08:00 | Presenting Author(s): Nicoleta Mitrea
Since 1967, when the first Hospice has been opened by Dame Cicely Sounders (founder of St. Christopher’s Hospice, London, England), and palliative care has been blended with hospice, several definitions have been given to palliative care and hospice terms. In 1997, the palliative care definition by Field and Cassel was short and simple: "palliative care is seeking to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure". The current most common references for palliative care definition is the World Health Organization's, 2002: "Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." (Sepulveda et al., 2002). Variations in defining palliative care have recently caused controversies among professionals in the multidisciplinary teams, as it is now the case with the definition given by International Association for Hospice and palliative care: "Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers." (IAHPC, 2018). Even more controversies are surrounding the term Hospice as confusion exists regarding the differences and overlaps between hospice and palliative care.
In this presentation several definitions of terms will be discussed, including palliative care, quality of life, hospice and death. In order to better illustrate the case, the principles of palliative care will be remembered: holistic care, objective of care = improved quality of life, affirms life and regards death as a normal process, doesn’t hasten or postpone death, patient in the center of care and families as units of care, care provided by a multidisciplinary team, bereavement support for families. Some suggestions will be made for aligning to the reality of living a finite life and for the acceptance of the universal mystery of death.
Palliative care and hospice need to be destigmatized and promoted among both, the general public and the healthcare professionals, in order to be early on integrated in the trajectory of a serious disease progression. For this reason, the bow tie model of 21st century for palliative care - the enhanced model, will be described.
In conclusion, palliative and hospice are about: quality of life, being human, meaningful relationships, control of pain and other symptoms, respect for the dignity of the person, growing throughout the trajectory of the disease. The take home message is valuable for all of us: “You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die.” (Dame Cicely Saunders)
Field, M.J., & Cassel, C.K., (1997). Approaching death: Improving care at the end of life (Report of the Institute of Medicine Task Force). Washington, D.C.: National Academy Press.
IAHPC. Global Consensus based palliative care definition. (2018).Houston, TX: The International Association for Hospice and Palliative Care.
Retrieved from https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/
Sepulveda, C., Marlin, A., Yoshida, T. & Ulrich, A. (2002). Palliative Care: The World Health Organization's global perspective. Journal of PAin & Symptom Management, 24(2), 91-96.