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A. McNamara
Moderator of
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MS 27 - Advocacy in Practice (ID 45)
- Event: WCLC 2015
- Type: Mini Symposium
- Track: Advocacy
- Presentations: 4
- Moderators:T. Bjork, A. McNamara
- Coordinates: 9/09/2015, 14:15 - 15:45, 703
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MS27.01 - Influencing Clinical Trials to Meet Patients' Needs and End-Points - Involving the Patient from the Beginning (ID 1968)
14:20 - 14:35 | Author(s): D. Kazandjian
- Abstract
- Presentation
Abstract not provided
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- Abstract
- Presentation
Abstract:
Evidence for clinical benefit from new treatment approaches is derived from phase III randomised clinical trials, which generate ostensibly unbiased data regarding the efficacy, benefit and safety of new therapeutic approaches. The potential benefits of a new treatment can be summarised as either living longer and/or living better, evaluated in clinical studies through the treatment effect on overall survival (OS) and/or quality of life (QoL), and their surrogates. In studies of interventions with curative intent in which mature survival data is not yet available disease-free survival (DFS), recurrence-free survival (RFS), event-free survival (EFS), distant disease free survival (DDFS), and time to recurrence (TTR), are used as surrogate measures. The validity of this approach, though not uncontroversial is well supported by data. In studies evaluating therapies in non-curative settings, progression-free survival (PFS), and time to progression (TTP) provide information about biological activity and may indicate benefit for some patients however they are not reliable surrogates for improved survival or QoL. Indeed in studies in which PFS benefit is observed, but because of subsequent treatments or crossover OS is not improved, QoL data is critical to evaluate the real meaning of the PFS. When QoL has been evaluated and there is either improvement or delayed deterioration this augments the significance of the PFS finding. Where is measured and PFS does not demonstrate improvement in QoL, this diminishes from the meaning of the PFS finding. QoL measurement has been widely adapted in the recent generation of lung cancer research and it has made a major contribution in verifying and amplifying the major clinical benefit conferred by Gefitinib, Afatanib and Crizotinib all of which were evaluated in PFS studies with crossover allowed. QoL has also been a critical primary outcome in an important study that demonstrated the QoL can be improved by initiating early palliative care for patients with metastatic lung cancer. 1. Fukuoka M, Wu Y-L, Thongprasert S et al. Biomarker analyses and final overall survival results from a phase III, randomized, open-label, first-line study of gefitinib versus carboplatin/paclitaxel in clinically selected patients with advanced non–small-cell lung cancer in Asia (IPASS). Journal of Clinical Oncology 2011; 29: 2866-2874. 2. Mok TS, Wu Y-L, Thongprasert S et al. Gefitinib or carboplatin–paclitaxel in pulmonary adenocarcinoma. New Engl J Med 2009; 361: 947-957. 3. Sequist LV, Yang JC-H, Yamamoto N et al. Phase III study of afatinib or cisplatin plus pemetrexed in patients with metastatic lung adenocarcinoma with EGFR mutations. Journal of Clinical Oncology 2013; 31: 3327-3334. 4. Yang JC-H, Hirsh V, Schuler M et al. Symptom control and quality of life in LUX-Lung 3: a phase III study of afatinib or cisplatin/pemetrexed in patients with advanced lung adenocarcinoma with EGFR mutations. Journal of Clinical Oncology 2013; 31: 3342-3350. 5. Shaw AT, Kim D-W, Nakagawa K et al. Crizotinib versus chemotherapy in advanced ALK-positive lung cancer. New Engl J Med 2013; 368: 2385-2394. 6. Solomon BJ, Mok T, Kim DW et al. First-line crizotinib versus chemotherapy in ALK-positive lung cancer. The New England journal of medicine 2014; 371: 2167-2177. 7. Temel JS, Greer JA, Muzikansky A et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363: 733-742.
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MS27.04 - Let's Yarn About Lung Cancer - An Indigenous Community Project in Regional Australia (ID 1971)
14:50 - 15:05 | Author(s): K. Callaghan, G. Colburn
- Abstract
- Presentation
Abstract:
Lung cancer is the leading cause of cancer death in Aboriginal and Torres Strait Islander people in Australia, with Indigenous Australians 70% more likely to die from lung cancer than non-Indigenous Australians. (1) Lung cancer is the most common cancer in Indigenous men and the second most common cancer in Indigenous women. In fact, the incidence and mortality rate of lung cancer is higher for Indigenous than for non-Indigenous Australians. (1)Figure 1Evidence indicates that Indigenous people experience poorer outcomes following a cancer diagnosis because this population has later presentation to healthcare and later diagnosis. In 2012, Lung Foundation Australia, a national non-government lung health organisation, in partnership with Hume Regional Integrated Cancer Services (Hume RICS) led a community engagement and cancer education program within the regional Indigenous community of Albury/Wodonga situated on the New South Wales and Victorian state borders. At the time, Albury/ Wodonga had a population of 4,000 Aboriginal people and Hume RICS Cancer Support Nurse had only cared for three identified Aboriginal cancer patients in the last five years. The Let’s yarn about lung cancer” project was a 2 year project that aimed to raise awareness and understanding of lung cancer risks and symptoms within the Indigenous community in Albury/Wodonga and to encourage those who have concerns about their lung health or the health of community members to take action. At the same time, the project team developed innovative and culturally sensitive ways to educate Aboriginal Health Workers and local community health providers in the early diagnosis, treatment and supportive care needs of local Aboriginal cancer patients and their families - with a focus on lung cancer. A suite of culturally sensitive, evidence based patient resources were produced including :- a lung cancer symptoms and risks community education DVD entitled “Let’s Yarn about lung cancer” 3 patient DVD stories around being proactive about potential symptoms, curative treatment away from “country” and life after treatment including a survivor story from highly respected Indigenous singer/songwriter, Archie Roach. an Aboriginal lung cancer awareness pin Integral to the success of this project was the appointment of a local Aboriginal Project Officer who had strong relationships within the local Aboriginal and community health sector, was well respected in the local Aboriginal community and who ensured that culturally sensitivity was a key component of the project deliverables. National cancer control agency, Cancer Australia acknowledges that “there is no word meaning “cancer”, in most, if not all Indigenous Australian languages. Unlike many other illnesses, the concept of cancer is not embedded in the traditional Indigenous Australian story-telling”. (2) Prior to the “Let’s yarn about lung cancer” project, cancer was not a topic that was on the “radar” for local Aboriginal Health Workers or the Albury/Wodonga Aboriginal community. Cancer was not openly discussed. Let’s yarn about lung cancer project deliverables and highlights included: Establishment of a dynamic project advisory group with strong representation from the local Indigenous health and community health services. Delivery of a series of culturally sensitive cancer education sessions on lung cancer, treatment options and palliative care services to local Aboriginal Health Workers within existing Chronic Health events. Local Aboriginal health workers attended interactive educational sessions at the local radiation, chemotherapy and palliative care units. These “walk-thru” visits provided an understanding of treatment options, referral pathways and the supportive care services available. Provision of training for key Aboriginal Health Workers in culturally sensitive cancer support group facilitation and palliative care training. In summary, the Let’s yarn about lung cancer project partners (Lung Foundation Australia and Hume Regional Integrated Cancer Services) developed a stronger collaborative relationships with the Aboriginal Health Workers and the local Aboriginal community, resulting in barriers to treatment and care being reduced. In turn, local cancer services have become more culturally aware, with health workers and community members feeling more comfortable accessing the local cancer services with their clients.Figure 2 References Cancer Australia. Report to the Nation - Lung Cancer 2011. Cancer Australia, Sydney, NSW, 2011. Cancer Australia, 2015. Lung cancer in our mob: a handbook for Aboriginal and Torres Strait Islander Health Workers. Cancer Australia, Surry Hills, NSW.
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MS27.05 - Supporting Lung Cancer Survivors – Living with and Beyond Lung Cancer (ID 1972)
15:05 - 15:35 | Author(s): J. Freeman-Daily
- Abstract
- Presentation
Abstract:
When I heard the words "lung cancer" at age 55, I could barely believe the diagnosis. The facts I found online were not encouraging. As we moved through the various staging procedures, my family and I experienced increasing levels of fear. Within sixteen months I had two chemo regimens, two radiation protocols, and two progressions. Fortunately, my online patient community informed me about mutation testing and the new ROS1 translocation. My tumor tissue tested positive for ROS1, and I started taking crizotinib in a clinical trial in November 2012. I’ve had No Evidence of Disease for 30 months and counting. More new treatments have become available for lung cancer patients in the past four years than in the past four decades. Precision medicine, clinical trials, reliable online information sources, supportive online patient and caregiver communities, and care teams that engage in shared decision making have enabled me and many other metastatic lung cancer patients to beat the odds and live with metastatic lung cancer as a chronic illness instead of a death sentence. No therapy offers a permanent cure. We live from scan to scan. Yet we’re happy to be alive and have a relatively normal life for as long as it lasts. What are the keys to living with and beyond lung cancer? To live successfully with lung cancer, patients need access to appropriate and affordable treatment from compassionate, capable healthcare providers. We need those healthcare providers to stay current with treatment guidelines and use precision medicine best practices such as genomic sequencing to find effective treatments for our individual cancers. But we metastatic patients – who make up a majority of lung cancer patients -- need more than this. We need consultations with experts who have knowledge about our individual types of lung cancer. We need help accessing second opinions and clinical trials. We need plans for the next steps in case treatments aren’t effective. We need access to support services that improve our quality of life. Connecting stage IV patients to palliative care services early in the diagnosis and treatment process improves quality of life, gives us resources for dealing with treatment side effects and pain, and develops relationships which can help us and our family members consider our goals in pursuing further treatment. We need psychosocial supports for ourselves and loved ones to cope with depression and facilitate important conversations on difficult topics. After successful curative treatments, we need survivorship plans, and possibly rehab to deal with side effects. In addition to treatments, we need help to break through the shock of diagnosis, to become activated and engaged patients who participate in our own care--engaged patients tend to have better outcomes. We need people to dispel the stigma associated with lung cancer and treat us with respect and compassion regardless of our smoking history. After cancer forces us to realize how little control we truly have in life, we need to regain some sense of control. Choosing treatment options using a shared decision making process with our healthcare providers ensures our priorities and values are considered, and helps us understand the risks and benefits of each option. Connected health resources can help more lung cancer patients become engaged and participate in shared decision making. Trusted websites hosted by the NCI, cancer centers, medical societies, and advocacy organizations help inform us about our disease and our options. Patient success stories on personal blogs and social media offer us hope. Talking with other patients and caregivers who are sharing the same experiences lifts our spirits and helps us deal with side effects and losses. When both patients and healthcare providers embrace molecular and genomic testing, clinical trials as treatment options, online resources, connected patient and caregiver communities, and shared decision making, more lung cancer patients will successfully live with and through lung cancer. Barry MJ, Edgman-Levitan S. Shared Decision Making — The Pinnacle of Patient-Centered Care. N Engl J Med 2012; 366:780-781. DOI: 10.1056/NEJMp1109283. http://www.nejm.org/doi/full/10.1056/NEJMp1109283 accessed 7/2/2105. Cataldo JK, Brodsky JL. “Lung cancer stigma, anxiety, depression and symptom severity.” Oncology. 2013;85(1):33-40. doi: 10.1159/000350834. Epub 2013 Jun 29. http://www.ncbi.nlm.nih.gov/pubmed/23816853 accessed 7/1/2013. Glattki GP, Manika K, Sichletidis L, Alexe G, Brenke R, Spyratos D. Pulmonary rehabilitation in non-small cell lung cancer patients after completion of treatment. Am J Clin Oncol. 2012 Apr;35(2):120-5. doi: 10.1097/COC.0b013e318209ced7. http://www.ncbi.nlm.nih.gov/pubmed/21378541 accessed 7-1-2015. Health Policy Brief: Patient Engagement. Health Affairs. February 14, 2013. Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler NE, Page AEK, editors. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington (DC): National Academies Press (US); 2008. 1, The Psychosocial Needs of Cancer Patients. Available from: http://www.ncbi.nlm.nih.gov/books/NBK4011/ Jean-Pierre P, Johnson-Greene D, Burish TG. Neuropsychological care and rehabilitation of cancer patients with chemobrain: strategies for evaluation and intervention development.. Support Care Cancer. 2014 Aug;22(8):2251-60. doi: 10.1007/s00520-014-2162-y. Epub 2014 Mar 27. http://www.ncbi.nlm.nih.gov/pubmed/24671433 accessed 7/1/2015. Kvedar J, Coye MJ, Everett W. “Health Policy Brief: Connected Health: A Review Of Technologies And Strategies To Improve Patient Care With Telemedicine And Telehealth." Health Affairs. February 2014. Temel JS, Greer JA, Muzikansky A, Gallagher ER, et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. N Engl J Med 2010; 363:733-742 DOI: 10.1056/NEJMoa1000678. http://www.nejm.org/doi/full/10.1056/nejmoa1000678 accessed 7/1/2015. Wheler, J, Yelensky R, Stephen B, Hong D, et al. Prospective study comparing outcomes in patients with advanced malignancies on molecular alteration-matched versus non-matched therapy. Poster session presented at: ASCO 2015. 2015 Annual Meeting of the American Society of Clinical Oncology; 2015 May 29-Jun 2; Chicago, IL. http://meetinglibrary.asco.org/content/111990?media=vm&poster=1 accessed 7/1/2015.
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Author of
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ORAL 12 - Quality of Life and Trials (ID 96)
- Event: WCLC 2015
- Type: Oral Session
- Track: Advocacy
- Presentations: 1
- Moderators:E. Bachrach Makovsky, C. Malnati
- Coordinates: 9/07/2015, 10:45 - 12:15, 708+710+712
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ORAL12.01 - Priority of Daily Life v's Medical Care Challenges for Lung Cancer Patients and Carers (ID 2632)
10:45 - 10:56 | Author(s): A. McNamara
- Abstract
- Presentation
Background:
People living with lung cancer (LC), LC survivors and carers are impacted by LC in different ways. The Global Lung Cancer Coalition (GLCC) recognises lung cancer patients’ and carers’ isolation and the challenges they face (GLCC, 2015). However for those affected by LC, limited data exists on the priority of their challenges, their ability to cope with these challenges and if enough relevant information and support is available. Identifiable variances between patient and carer experience and how challenges differ based on gender, age and nationality are also unknown. In 2013, The GLCC and Boehringer Ingelheim collaborated to create a global survey to identify these priorities and variances.
Methods:
A unique web-based survey was designed to isolate the single greatest challenge faced by individuals affected by LC. 200 specific and globally relevant challenges were identified by LC experts from the GLCC, grouped into categories and illustrated, with a small text descriptor. At survey entry, respondents identified their greatest challenge relevant to either daily life or medical care. Via an associated illustration, respondents chose subsequent sub-categories of challenges until one specific challenge was identified as the most significant. Respondents answered 3 questions in relation to that challenge regarding 1) availability of information 2) ability to cope 3) level of support required. Screening was conducted for age, gender, treatment and nationality. Respondents were asked to identify if they were living with LC, a LC survivor or a carer. The survey was available in 11 languages and promoted through the GLCC, LC clinicians, charities and associated support groups.
Results:
2871 individuals visited the survey site. 725 (25%) completed the survey. 64% of LC patients chose a daily life challenge as their most significant, compared to a medical care challenge (36%); 55% of carers also chose a daily life challenge, compared to a medical care challenge (45%). Of all participants who chose daily life, 19.8% identified emotional and/or social needs as the most significant sub-topic, 14.8% identified survivorship/ caring for myself; 13.8% body image and 7.6% stigma. Of all participants who chose medical care, 20.5% identified diagnosis as the most significant sub-topic; 18.9% identified treatment planning & options; 14.9% receiving treatment and 10.2% end of life issues. 56.2% of individuals who chose one of the top 16 challenges (n=589, 81% of all participants) requested more information about the challenge identified.
Conclusion:
Psychosocial issues related to daily life and a lack of relevant information posed some of the greatest challenges to LC patients. LC patients were more likely to identify daily life issues such as dealing with emotional needs, self-care, body image or changing relationships as their greatest challenge rather than medical care issues such as diagnosis, treatment planning or screening. Lung cancer patients have the right to have the enormous burden of lung cancer acknowledged by professional carers, policy makers and the general public (GLCC, 2015). Daily life challenges should be identified and alleviated as part of routine LC care to ensure LC patients and carers receive the necessary spectrum of support and information.
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P1.10 - Poster Session/ Advocacy (ID 228)
- Event: WCLC 2015
- Type: Poster
- Track: Advocacy
- Presentations: 2
- Moderators:
- Coordinates: 9/07/2015, 09:30 - 17:00, Exhibit Hall (Hall B+C)
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P1.10-003 - Lung Cancer in Ireland 2010 - 2015 - Are We Making Progress? (ID 1654)
09:30 - 09:30 | Author(s): A. McNamara
- Abstract
Background:
The burden of lung cancer: According to the National Cancer Registry in Ireland (NCRI) lung cancer was the single most common cause of cancer death during 2010-2012, with approximately 1,780 deaths annually, just over one-fifth of all cancer deaths. The lung cancer mortality rate in Ireland decreased significantly, by almost 2% annually, in males but increased by 0.5% annually in females during 1994-2012. These trends reflect smoking prevalence from decades earlier, but the contrast between males and females is striking (1). Since 2010, lung cancer detection and awareness has changed considerably in Ireland. Health Services: In 2010, the National Cancer Control Programme (NCCP) and Health Service Executive (HSE) distributed General Practitioner (GP) Guidelines on the management of suspected lung cancers. At the same time, rapid access clinics were established in the eight National designated cancer centres. National Awareness: In 2011 the Irish Cancer Society (the Society) launched a five year advertising and PR campaign to raise awareness of lung cancer in a novel and engaging way. The aim of the campaign was to avoid adding to the stigmatisation of lung cancer, but instead encourage people concerned about lung cancer and those already affected by it to contact the Society’s National Cancer Helpline.
Methods:
Since 2010, substantial changes have been put in place to manage the burden of lung cancer in Ireland. An audit was performed in 2015 to measure the impact of these changes and ask if we are making progress.
Results:
Health Services: In 2013; a total of 869 primary cancers were detected by the eight NCCP rapid access lung cancer clinics. This represents a 30% detection rate (2). National Awareness: Behaviour & Attitudes undertook market research (commissioned by the Society) in 2011 and 2013 to evaluate the impact of the advertising and PR campaign and found just under three million adults recall some media attention on the issue of lung cancer in February (2013). This was up considerably on 2011 levels (2.1 million Vs. 2.8 million).
Conclusion:
The NCRI state that lung cancer incidence is rising and by 2040 the rate is projected to increase by 136% in females and 52% in males (3). While the burden of lung cancer increases in Ireland, the changes in health services has ensured that anyone concerned about lung cancer can go to their GP and be referred to a rapid access clinic if necessary. A dedicated pathway to allow for suspect cases to be fast tracked and diagnosed on an urgent basis is now in place (2). At the same time, awareness is on the increase; by removing the link between lung cancer and grim tobacco messaging and instead communicating a message of empowerment, more people engaged with the Society’s campaign and it was deemed a success. The Society continues to utilise a variety of mediums in future campaigns to support people concerned about lung cancer without stigmatising them.
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P1.10-004 - Novel Survey to Identify Single Greatest Challenge for Lung Cancer Patients and Carers (ID 2593)
09:30 - 09:30 | Author(s): A. McNamara
- Abstract
Background:
People living with lung cancer (LC), LC survivors and carers are impacted by LC in different ways. The Global Lung Cancer Coalition (GLCC) recognises lung cancer patients’ and carers’ isolation and the challenges they face (GLCC, 2015). However for those affected by LC, limited data exists on the priority of their challenges, their ability to cope with these challenges and if enough relevant information and support is available. Identifiable variances between patient and carer experience and how challenges differ based on gender, age and nationality are also unknown. In 2013, The GLCC and Boehringer Ingelheim collaborated to create a global survey to identify these priorities and variances.
Methods:
A unique web-based survey was designed to isolate the single greatest challenge faced by individuals affected by LC. 200 specific and globally relevant challenges related to medical and psychosocial topics were identified by LC experts from the GLCC, grouped into categories and illustrated, with a small text descriptor. Each illustration was designed to represent a specific challenge, to be culturally sensitive and to overcome potential language barriers. At survey entry, respondents identified their greatest challenge as relevant to either daily life or medical care. Via an associated illustration, respondents chose subsequent sub-categories of challenges until one specific challenge was identified as being the most significant. Respondents answered 3 questions in relation to that challenge regarding: 1) availability of information 2) ability to cope 3) level of support required. Screening was conducted for age, gender, treatment and nationality. Respondents were asked whether they were living with LC, a LC survivor or a carer. The survey was available in 11 languages and promoted through the GLCC, LC clinicians, charities and associated support groups.
Results:
2871 individuals visited the survey site. 725 (25%) completed the survey. 17% were from North America, 38% Europe, 31% Asia/Pacific, 7% Central/ South America, 7% Middle East / Africa. 52% were carers, 18% were LC survivors and 30% were living with LC. 64% of LC patients chose a daily life challenge as their most significant, compared to a medical care challenge (36%); 55% of carers also chose a daily life challenge, compared to a medical care challenge (45%).
Conclusion:
A unique survey to effectively isolate the single greatest challenge for individuals affected by LC and to identify current gaps in care, support and information. Bespoke illustrations, combined with a simple and easy-to-complete method, created a globally relevant tool that could produce specific, action-orientated results in order to shape global and local approaches to LC patient care and carer support; alleviate potential shortcomings and optimise patient experience.
