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M. Peters
Moderator of
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G02 - Global Lung Cancer Coalition (GLCC) Session: Deserve Better - Expect Better: Advocating for Better Outcomes for Lung Cancer Patients (ID 15)
- Event: WCLC 2013
- Type: Other Sessions
- Track: Nurses
- Presentations: 6
- Moderators:P. Goldstraw, M. Peters
- Coordinates: 10/28/2013, 16:15 - 17:45, Bayside 105, Level 1
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G02.1 - Public Awareness of Lung Cancer Symptoms - The GLCC/IPSOS MORI 2013 International Consumer Poll (ID 439)
16:15 - 17:45 | Author(s): J. Elgood
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Introduction Ipsos MORI were commissioned by the Global Lung Cancer Coalition to explore the prevalence of smoking within countries; and awareness of the symptoms of lung cancer. Two questions were asked: 1. Can I just check, do you consider yourself to be: a) A current smoker – i.e. someone who is a regular smoker at the present time; b) A former smoker – i.e. someone who used to smoke regularly but has quit; c) Someone who has never smoked – i.e. someone who has never smoked at all, or only very occasionally in the past (less than 100 cigarettes in your lifetime); d) Don’t know. 2. There are many warning signs and symptoms of lung cancer. Please name as many symptoms of lung cancer as you can think of.[1] A quantitative survey was conducted across: Argentina, Australia, Bulgaria, Canada, Denmark, Egypt, France, Germany, Great Britain, Ireland, Italy, Japan, Mexico, Norway, Portugal, Slovenia, Spain, Sweden, Switzerland, the Netherlands, and the USA. This abstract outlines the headline findings[2]. Methodology A nationally representative quota sample for each country of 500–1,204 adults was interviewed from 2 June – 16 August 2013[3], using Omnibus services (please note the lowest age varied slightly between countries)[4]. Face-to-face in-home interviewing was used in Bulgaria, France, Germany, Great Britain, Portugal and Spain, and telephone (CATI[5]) interviewing elsewhere (in Argentina, Australia, Canada, Denmark, Egypt, Ireland, Italy, Japan, Mexico, Norway, Slovenia, Sweden, Switzerland, the Netherlands, and the USA). Data have been weighted to the known adult population profile of each country. Please also note that booster surveys took place in Mexico, Norway, Sweden and Slovenia to boost the number of smokers in order to allow robust comparisons. In each country, data were weighted back to the original profile of smokers and non-smokers to ensure that smokers were not over-represented. Discussion of findings: where is smoking prevalence highest? Of all the 21 countries surveyed, people in Bulgaria are most likely to be current smokers (41%), followed by Spain (33%) and France (30%). The lowest proportions of current smokers are found in Sweden (12%) and Australia (13%). Egypt, however, has the highest proportion of people who have never smoked at all (70%). Figure 1 Spontaneous awareness of the symptoms of lung cancer The combined results from all countries show that breathlessness (40%) and coughing (39%) are the most frequently recognised symptoms of lung cancer. Other symptoms relating to coughing, as well as general or unspecified coughing, are also commonly mentioned: coughing blood (17%), a cough that doesn’t go away (14%), and a cough that gets worse (8%). Tiredness or a lack of energy (13%) and an ache or pain when coughing or breathing (11%), are spontaneously mentioned by more than one in ten people as well. It should also be recognised that approaching one in four could not name any symptoms, instead stating that they didn’t know (23%). Figure 2 Spontaneous awareness varies significantly by country. For example, fewer than one in four Japanese adults mention breathlessness (22%), compared to a high of 56% in Ireland. Likewise, whilst 27% state tiredness or a lack of energy to be a symptom of lung cancer in Bulgaria, only 5% of Australians do the same. The following table shows the most frequently mentioned symptoms in each country. Breathlessness is the symptom respondents are most commonly aware of in fifteen countries, with general or unspecified coughing emerging more frequently in the other six.
When analysing the mean number of potential symptoms of lung cancer mentioned in each country depending on whether respondents are current smokers, former smokers, or have never smoked at all, awareness appears to be fairly consistent. Please note that people who said that they did not know any symptoms have been excluded from this analysis. The following table highlights within each country which of the three groups has the highest mean score (i.e. the most mentions of symptoms per respondent). The key finding from this is that current smokers often mention fewer symptoms of lung cancer than former smokers or people who have never smoked. In three countries (France, Ireland and Portugal), current smokers do appear to have a greater awareness of potential symptoms, whilst in Sweden, current and former smokers have the same mean score.Country Most frequently mentioned Second most frequently mentioned Third most frequently mentioned Argentina Breathlessness (31%) A cough (26%) Tiredness or lack of energy (12%) Australia Breathlessness (53%) A cough (37%) Coughing blood (32%) Bulgaria Breathlessness (50%) Coughing blood (37%) A cough that gets worse (30%) Canada Breathlessness (49%) A cough (45%) Coughing blood (20%) Denmark Breathlessness (51%) A cough (48%) An ache or pain when coughing or breathing (20%) Egypt Breathlessness (25%) Persistent chest infections (23%) A cough (15%) France A cough (54%) Breathlessness (37%) A cough that doesn't go away (25%) Germany Breathlessness (36%) Coughing blood (34%) A cough that doesn't go away (31%) Great Britain Breathlessness (46%) A cough (43%) Coughing blood (27%) Ireland Breathlessness (56%) A cough (56%) Coughing blood (27%) Italy Breathlessness (42%) A cough that doesn't go away (32%) A cough (29%) Japan A cough (50%) Breathlessness (22%) A cough that doesn't go away (21%) Mexico A cough (33%) Breathlessness (27%) An ache or pain when coughing or breathing (10%) Netherlands Breathlessness (45%) A cough (45%) Tiredness or lack of energy (13%) Norway Breathlessness (47%) A cough (40%) Chest and/or shoulder pains (9%) Portugal Breathlessness (35%) A cough (33%) Tiredness or lack of energy (18%) Slovenia A cough (52%) Breathlessness (31%) Coughing blood (10%) Spain A cough (29%) Breathlessness (25%) Tiredness or lack of energy (20%) Sweden A cough (46%) Breathlessness (42%) Tiredness or lack of energy (10%) Switzerland A cough (53%) Breathlessness (43%) An ache or pain when coughing or breathing (12%) USA Breathlessness (38%) A cough (37%) Coughing blood (14%)
[1] A pre-coded list was provided for interviewers to code responses. Respondents were able to code multiple responses. [2] Please note that at this stage the findings are based on interim data. [3] The base sizes in each country were as follows: Argentina (500), Australia (1,000), Bulgaria (1,148), Canada (1,005), Denmark (650), Egypt (1,009), France (953), Germany (1,073), Great Britain (957), Ireland (1,000), Italy (510), Japan (1,204), Mexico (600), Norway (529), Portugal (1,203), Slovenia (580), Spain (500), Sweden (550), Switzerland (510), the Netherlands (1,004), and the USA (1,000) [4] The lowest age for each country is as follows: Germany: 14 years; Australia, Ireland, Mexico and Norway: 15 years; Sweden: 17 years; Egypt and Japan: 20 years; all other countries: 18 years. [5] Computer Assisted Telephone InterviewingMean number of mentions of symptoms of lung cancer per respondent (who named at least one symptom) Country Current smokers Former smokers Never smokers Argentina 1.97 1.97 2.11 Australia 2.04 2.47 2.28 Bulgaria 3.63 4.18 3.97 Canada 2.57 2.53 2.77 Denmark 2.39 2.34 2.43 Egypt 3.09 3.32 3.32 France 2.54 2.53 2.40 Germany 3.02 3.66 3.69 Great Britain 2.77 2.89 2.75 Ireland 3.21 2.99 2.94 Italy 2.46 2.53 2.43 Japan 2.41 2.55 2.67 Mexico 1.98 1.84 2.00 Netherlands 1.99 2.19 2.24 Norway 1.86 2.14 2.18 Portugal 2.61 2.54 2.43 Slovenia 2.35 2.46 2.16 Spain 2.13 2.30 2.13 Sweden 1.98 1.98 1.89 Switzerland 1.94 2.31 2.23 USA 1.93 1.97 2.01 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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G02.2 - Outcomes from Public Information Campaigns (ID 440)
16:15 - 17:45 | Author(s): J. Fox
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Lung Cancer Public Information Campaign – Striving to Ensure Earlier Lung Cancer Diagnosis Jesme Fox, Medical Director, Roy Castle Lung Cancer Foundation, UK. ________________________________________________________________________ Background Despite recent advances, lung cancer remains a disease characterized by late diagnosis and poor outcomes. Diagnosing more lung cancer patients, at an early stage, when curative treatments are an option, will save lives. In recent years, there has been a focus on lung cancer screening. In countries where lung cancer screening is available, high risk individuals are being directed to these services. In other counties, advocates are calling for further research to evaluate the benefit of screening tools. Raising general public awareness of the signs and symptoms associated with lung cancer is of importance in the pursuit of earlier diagnosis. It is a key function of many advocacy groups working in the lung cancer field. With the variety of associated signs and symptoms, this is a difficult area. Using nationally agreed guidelines, advocacy groups have produced information, such as the GLCC awareness raising leaflets, available for download, in 13 languages [1]. As noted in a 2013 survey, undertaken by Public Health England, [2], 40% of people surveyed were unaware that a persistent cough could be a symptom of lung cancer.. Challenges Much negativity surrounds lung cancer and impacts on effective campaigning. Lung cancer is seen as a ‘depressing story’ and it is often difficult to engage the media. The notion of ‘self infliction’ surrounding this disease, adds to this difficulty. Furthermore, the stigma and blame associated with lung cancer is in itself, a contributing factor to late presentation in this disease [3, 4, 5,]. Stigmatisation has a very negative impact on the disease and on advocacy initiatives. Central to the lung cancer advocacy community is its focus on reducing the stigma associated with this disease. Many diseases are life style related, yet are not impacted in this way. It is important that whilst undertaking awareness campaigns, the messages of ‘no one deserves lung cancer’ and ‘smoker, former smoker or never smoker – anyone can get lung cancer’ are distributed widely. Public awareness raising campaigns in lung cancer Much of the awareness campaigning to date has come from the emerging Lung Cancer Patient Advocacy movement. Sadly, with poor survival, the number of lung cancer advocates and advocacy groups is relatively small, as compared with other common cancers. However, a key focus has been the November, ‘Lung Cancer Awareness Month’ initiative, initially developed in the US, by the Alliance for Lung Cancer Advocacy, Support and Education (now the Lung Cancer Alliance) and adopted by the global community, through the Global Lung Cancer Coalition, in 2001. The campaign aims to raise awareness of the signs and symptoms associated with lung cancer, change public perceptions and help to de-stigmatize this disease. An early example of this was the 2002 general public and media campaign, organized in the UK by the Roy Castle Lung Cancer Foundation and Macmillan Cancer Relief [6]. In recent years, the cross country initiative, involving Australia, Egypt and the US, being the ‘Shine a Light on Lung Cancer’ campaign, originally developed by Lung Cancer Alliance [7]. Other campaigns, from across the globe, will be described. In the UK, we have seen a number of general public lung cancer awareness raising initiatives, through the National Awareness and Early Diagnosis Initiative (NAEDI). We have also seen local campaigns such as the ‘’Doncaster Cough Campaign’’ [8] – in the 11 GP surgeries studied, after its first year (2008), noted, 19% of lung cancers diagnosed in Stage I and II, an increase from 11% in the previous year. We have also seen centrally, government funded campaigns. In England, the Department of Health, in 2012, funded the national ‘Be Clear on Cancer – Lung Cancer’ campaign [9]. This campaign, focusing on ‘’persistent cough’’ and results from the pilot study noted a 22% increase in the number of patients who visited their General Practitioner with relevant symptoms and also noted an increase in Chest CTscans being performed. This campaign has been repeated in the summer of 2013. In Scotland, the ‘Detect Cancer Early’ campaign is developing a national lung cancer component. References GLCC website (lung cancer signs and symptoms awareness leaflets, for download) http://www.lungcancercoalition.org/en/download-our-awareness-leaflet Online omnibus survey for Public Health England, conducted with representative sample of 1045 adults, between 7 and 10 June 2013 by TNS BMRB. http://www.gov.uk/government/news/don’t-ignore-a-persistent-cough-warns-lung-cancer-campaign Corner, J., J. Hopkinson, and L. Roffe, Experience of health changes and reasons for delay in seeking care: A UK study of the months prior to the diagnosis of lung cancer. Social Science and Medicine, 2006. 62: p. 1381-1391. Tod, A.M., J. Craven, and P. Alllmark, Diagnostic delay in lung cancer: a qualitative study Journal of Advanced Nursing 2008. 61(3): p. 336-343. Corner, J., et al., Is late diagnosis of lung cancer inevitable? Interview study of patients recollections of symptoms before diagnosis. Thorax, 2005. 60: p. 314-319. Baird J. Raising the Public Profile of Lung Cancer – Report of a National Lung Cancer Awareness Campaign in the UK. Lung Cancer (2003) 42, 119-123. Lung Cancer Alliance – Shine a Light campaign http://www.lungcanceralliance.org/shinealightonlungcancer/ Athey, U.L., Suckling R.J, Tod, A.M, Walters, S.J, Rogers, T.K, Thorax, 2012. May: 67(5); 412-7. Early diagnosis of lung cancer : evaluation of a community based social marketing intervention. Be Clear on Cancer – Lung Cancer campaign http://www.campaigns.dh.gov.uk/category/beclearoncancer/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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G02.3 - Clinicians as Advocates: Raising Public Awareness of Lung Cancer - The West Japan Oncology Group Experience (ID 441)
16:15 - 17:45 | Author(s): T. Sawa, K. Eguchi, Y. Iwamoto, H. Semba, H. Yamamoto, T. Kashii, T. Seto, S. Nakamura, Y. Nakanishi
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Background: In Japan and Asian countries, patient advocacy has not been popular to citizens and government, especially in patients with lung cancer compared to USA and EU countries. Therefore, a few clinicians had played a role as advocate instead of cancer survivors group or governments. Clinicians as advocates have a certain advantage to give professional information by themselves, with trained communication skill about bad news, and to use medical resources which is involved to medical society for lung cancer or hospital. West Japan Oncology Group (WJOG), non-profit organization which was established in 2000 by volunteer oncologists, has the mission to conduct and support multi-center clinical co-operative study for cancer and to provide the information about lung cancer, the importance and necessity of clinical study for standard treatment widely, therefore to contribute improving social welfare. Methods: To achieve the mission of WJOG, we carried out open lecture in city hall in major city every year and published lecture recordings in newspaper as well DVD video distribution. In another way, we planed to publish the guideline book for the patients with lung cancer and revised in five years interval. The board of directors determined the plan and the guideline editors committee was organized by WJOG member in March, 2006. The committee edited constitution, drafting, plan, writing as an enterprise in 2006, and 2011. Questions and answers style was adopted in accordance to previous US guidebook . Results: In these 12 years, 27 times of open lecture were held and medical specialists for oncology, novelists with cancer, representative or president of organization for patients advocacy, and etc gave lecture and discussed with patients. Nearly two to eight hundred people had participated in each meeting, occupied by most women and senior citizens. The questionnaire survey to participant revealed satisfaction for lecture and expectation for next meeting. The contents of lecture appeared full page in the Asahi which has a large circulation of almost 8 million (the second position in the world) as well as DVD-video was distributed widely to institute participating to our study and patients for the purpose of providing larger citizens with useful information. Furthermore WJOG official web site show the detail of each lecture in Japanese because Japanese patients with lung cancer are old and difficult to read English web site. Last year, second edition guideline book for patients was edited which consists of 118 questions and answers with full color 200 pages, as well posted to the WJOG website. GLCC international quantitative survey in 2010 showed that Japan is one of the countries with the greatest proportion of adults who think lung cancer is the biggest killer Conclusions: It seems that patient advocacy is developed to be more popular through open lecture, newspaper, web site and guideline book even in Japan. This method may be one of the ways to raise public awareness of lung cancer in Asian countries.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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G02.4 - Survivors as Advocates: What is possible? - The Lung Cancer Alliance Experience (ID 442)
16:15 - 17:45 | Author(s): K. Cofrancesco
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Working with survivors is the foundation for every one of our programs at Lung Cancer Alliance. We examined the past nine years and the varying degrees of success of each of our initiatives based on the engagement of survivors to accomplish our goals. We will discuss the ways in which survivors join our movement and the various ways in which advocacy can help them during their journey with lung cancer.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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G02.5 - How Clinicians and Patients Can Benefit From Better Data on Lung Cancer (ID 443)
16:15 - 17:45 | Author(s): M.D. Peake
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Background There is evidence from a variety of sources that lung cancer outcomes in the UK are worse than in many other parts of the developed world [1,2]. Part of this ‘survival gap’ can be explained by late diagnosis as evidenced by an excess of deaths within the first few months of diagnosis [3] and a high rate of patients (~40%) being first diagnosed during emergency hospital admissions [4]. However stage-for-stage survival is also worse in the UK [2], surgical resection rates are [5] and there is a clear relationship between these rates and survival [6].Methods The National Lung Cancer Audit (NLCA) had its first full year of data collection in 2005. Its aim was to collect a core dataset of around 140 items on all patients newly diagnosed and with lung cancer and mesothelioma in all hospitals in England expanding to cover the entire UK from 2008. Data is collected by the Multi-disciplinary teams and entered onto a secure national database. As of May 2013 there are almost 220,000 patient records for England alone in the database and all hospitals in the UK regularly report data for their patients. Annual reports contain a wide range of indicators including: numbers of patients diagnosed; treatment rates for surgery, chemotherapy and radiotherapy, case mix factors such as age, stage, performance status, co-morbidity and socio-economic status. Median and one-year survival rates are also reported. Data are presented both in terms of crude percentages and case-mix adjusted odds ratios. These reports, including the identification of hospitals, are available to the public. The programme has been backed up by a series of meetings with hospital teams to identify their particular strengths and weaknesses, to support them in service improvement and to share examples of best practice.Results The table below shows some examples of data completeness and the ‘headline indicators’ from England and Wales between 2005 and 2011 (the latest period for which data are available). It will be seen that data quality and completeness has improved as have all the process and outcome indicators.Figure 1 We have demonstrated that there is wide variation in treatment and survival within the UK [7,8]. One of the most dramatic and important impacts of the audit has been the realisation of just how low surgical resection rates were in some parts of the UK and that this was related to a serious shortage of specialist thoracic surgeons in many areas [9]. The number of thoracic surgeons has almost doubled since the publication of the first audit report and the overall resection rate has increased by almost 50%. In addition, we have many examples of where local practice and service configuration have been significantly improved as a result of this process. We are now assessing the extent to which these changes have been translated into improvements in survival. The Roy Castle Lung Cancer Foundation has developed a web-based system called the ‘Lung Cancer Smart Map’ [10] which allows patients to search how treatment in their area compares both with other hospitals and against national standards. Patient empowerment of this sort is potentially one of the most effective ways to drive up standards of care.Conclusions In summary, we have demonstrated that population-based data collection is feasible and as a result, the NLCA database is one of the largest and most detailed lung cancer databases in the world. The regular feedback and support that we have given to clinical teams and to patients has had a significant impact on the quality of care for patients in the UK and is now incorporated into our Cancer registration systems, with its potential value being enhanced by linkage to a wide variety of other data sources.References 1. Lung cancer survival and stage at diagnosis in Australia, Canada, Denmark, Norway, Sweden and the United Kingdom: a population-based study, 2004-2007. Walters S, Maringe C, Coleman MP, et al. Thorax, 2013;68:551-564 2. Coleman MP, Forman D, Bryant H, et al.; ICBP Module 1 Working Group. Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995-2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. Lancet,2011;377:127–138 3. National comparisons of lung cancer survival in England, Norway and Sweden 2001- 2004: differences occur early in follow-up Holmberg L, Sandin F, Bray F, et al. Thorax, 2010;65:436-441. 4. Elliss-Brookes L, McPhail S, Ives A, et al. Routes to diagnosis for cancer – determining the patient journey using multiple routine data sets. Br J Cancer 2012;107(8):1220-6. 5. Recent trends in resection rates among non-small cell lung cancer patients in England. Riaz SP, Linklater KM, Page R, et al. Thorax, 2012;67(9):811-4. 6. Variation in radical resection for lung cancer in relation to survival: population-based study in England 2004-2006. Riaz SP, Lüchtenborg M, Jack R, et al.Eur J Cancer 2012;48:54-60 7. Exploring Variations in Lung Cancer Care Across the UK - The “Story So Far” for the National Lung Cancer Audit. P Beckett, I Woolhouse, R A Stanley, M D Peake. Clinical Medicine, 2012; 12:4-8 8. Health & Social Care Information Centre. The National Lung Cancer Audit Report 2012. Available at: https://catalogue.ic.nhs.uk/publications/clinical/lung/nati-clin-audi-supp-prog-lung-canc-coho-2011/clin-audi-supp-prog-lung-nlca-lap-2012-rep.pdf 9. The effects of increased provision of Thoracic Surgical Specialists on the variation in lung cancer resection rate in England. Lau KK, Rathinam S, Waller DA & Peake M.D. J Thoracic Oncology, 2013;8(1):68-72 10. Lung Cancer Smart Map, available at: www.roycastle.org/lungcancermapOnly 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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G02.6 - Closing Remarks, Including Comment on IASLC and Advocacy - The Future (ID 444)
16:15 - 17:45 | Author(s): P. Goldstraw
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At its strategic review in September 2011 the IASLC undertook a thorough overall of its existing committee structure. As the membership of the organisation expanded and its influence globally was increasing it was felt that it was appropriate for the organisation to move beyond its traditional scientific and educational roles to embrace fundamentally important aspects of care such as advocacy, the involvement of nurses and allied professionals and tackling the scourge of tobacco dependency. There were already several established advocacy organisations, especially in North America, the UK and Australia. Our aim was not to compete but to network with these bodies to ensure that advocacy issues were included in the discussions of every one of our other committees and at every educational activity organised by the IASLC and its partners. We are thus delighted that at this World Conference, the first since our committee was established, we have high profile sessions such as this, in collaboration with the Global Lung Cancer Coalition, and those held yesterday, organised by the Australian Lung Foundation and other partners. From 2015 our World Conferences will be held annually and our programme of regional meetings in Europe, Asia, North and South America will continue. We hope that the IASLC meetings and our journal, the Journal of Thoracic Oncology, will be seen as the appropriate platform for issues such as patient advocacy, specialist nurse care, smoking cessation and tobacco control to be aired. The members of the IASLC are specialists in every research and clinical care aspect of thoracic oncology, working to improve the outcomes for lung cancer and other thoracic malignancies. You, the advocates, are our link to patients who need, deserve and demand better care. Let us work together to the benefit our patients.
