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Maureen Rigney



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    MA07 - Towards Survivorship: The Landscape, Supports and Barriers (ID 904)

    • Event: WCLC 2018
    • Type: Mini Oral Abstract Session
    • Track: Advocacy
    • Presentations: 2
    • Now Available
    • Moderators:
    • Coordinates: 9/24/2018, 13:30 - 15:00, Room 205 AC
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      MA07.01 - No Longer Outliers: Understanding the Needs of Long-Term Lung Cancer Survivors (Now Available) (ID 12955)

      13:30 - 13:35  |  Presenting Author(s): Maureen Rigney

      • Abstract
      • Presentation
      • Slides

      Background

      Lung cancer is the leading cause of cancer death in most developed and developing countries. But people do survive, sometimes for many years. Those diagnosed with lung cancer experience higher levels of distress and have greater unmet physical and emotional needs compared with other types of cancer. But what of long-term survivors?

      Globally, The Cancer Atlas reported an estimated 1,878,000 people were living with lung cancer in 2012. With the introduction of screening and rapid treatment advancements, that number is only expected to increase. Are we prepared to meet the long term and late effects of lung cancer? First, we must better understand the experiences and identified needs of long-term survivors.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      820 people responded to a 120 question online survey that was distributed via social media and targeted outreach. 471 identified as lung cancer patients/survivors and 349 as loved ones. 21% of survivor-respondents indicated they had been diagnosed 5+ years prior.

      Queried on treatment and smoking histories, long-term survivors identified their most prevalent and problematic symptoms and side effects experienced during treatment, shortly after treatment ended and at 5+ years post-diagnosis. They also answered questions regarding treatment decision-making and palliative care discussions and provision of post-treatment survivorship plans.

      4c3880bb027f159e801041b1021e88e8 Result

      74% of long-term survivors had surgery, 43% had experienced a recurrence and 5% had participated in a clinical trial. None were current smokers.

      The most common (and problematic) late and long term symptoms and side effects were shortness of breath (39%), fatigue (28%) and anxiety (24%). Memory problems were also rated as common (27%).

      Long-term survivors indicated that during treatment, physical side effects were most problematic but post-treatment and long-term, emotional effects were more difficult. Financial issues were also more problematic 5+ years after treatment compared with other time periods. Both discussions of palliative care and provision of survivorship care plans were rare.

      8eea62084ca7e541d918e823422bd82e Conclusion

      Long-term lung cancer survivors were once considered ouliers but today those diagnosed are increasingly living five years and longer. How do the late and long-term physical effects of lung cancer and its treatments differ from survivors of other types of cancer? How do long-term survivors manage stigma and survivor guilt? What physical and emotional support and services do they need? This survey provides initial insights into the physical. emotional and financial effects of living longer with lung cancer but more research is needed to allow us to more fully understand how we can support our long-term survivors.

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      MA07.03 - Attitudes to Lung Cancer in Europe: Findings from a Global Consumer Survey (Now Available) (ID 12579)

      13:40 - 13:45  |  Author(s): Maureen Rigney

      • Abstract
      • Presentation
      • Slides

      Background

      If lung cancer is diagnosed early, patients’ chances of successful treatment are increased. Stigma
      around lung cancer, as a tobacco-related cancer, can discourage patients from talking to their doctor
      about potential symptoms. In 2017, the GLCC commissioned Populus to undertake an international
      consumer survey in each of the 25 countries of the GLCC members.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      1,000 adults, in 16 European countries, participated via an online survey in July 2017. To assess
      attitudes to lung cancer, they were told that lung cancer is mainly caused by smoking and other
      tobacco products. They were then asked the extent to which they agreed or disagreed with the
      statement: “I have less sympathy for people with lung cancer than for people with other cancers.”

      4c3880bb027f159e801041b1021e88e8 Result

      One in five (20%) people in Europe agreed that they have less sympathy for people with lung cancer
      than other forms of cancer (Chart 1). There was variation between countries with 30% of people in
      Portugal agreeing they have less sympathy in comparison to only 17% agreeing in Denmark, the
      Netherlands, Norway, Russia, Slovenia and Spain. Men in Europe are generally less sympathetic
      than women, and those aged over 55 are most sympathetic. In addition, there was a statistically
      significant correlation between those countries with lower cigarette consumption and people agreeing
      that they have less sympathy for people with lung cancer.

      Chart 1: European attitudes to lung cancer

      glcc - european attitudes - chart 1.png

      8eea62084ca7e541d918e823422bd82e Conclusion

      Everyone - no matter what the cause of their cancer - deserves to have high quality treatment and
      care. The persistent and varied levels of stigma associated with lung cancer across Europe needs to
      be addressed, so that people experiencing symptoms are not discouraged from seeking early
      intervention.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    MA10 - Considerations in Immunotherapy / Real World (ID 911)

    • Event: WCLC 2018
    • Type: Mini Oral Abstract Session
    • Track: Advanced NSCLC
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/25/2018, 10:30 - 12:00, Room 105
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      MA10.10 - Lung Cancer Stigma: A Ten-Year View of Patient, Provider, and Public Attitudes About Lung Cancer. (Now Available) (ID 13413)

      11:35 - 11:40  |  Author(s): Maureen Rigney

      • Abstract
      • Presentation
      • Slides

      Background

      The presence of lung cancer stigma is well documented (Chapple, 2004; Chambers, 2012; Marlow, 2015) and impacts the care and treatment of lung cancer survivors (Tod, 2008; Carter-Harris, 2014). In 2008, a large survey of patients, oncologists, and general public revealed that most participants felt lung cancer was principally caused by external factors, was preventable, and lung cancer patients were partly to blame for their illness (Weiss 2014; 2017). We replicated the survey to understand whether perceptions have changed over the last decade.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      1001 members of the general public, 208 lung cancer patients, and 205 oncologists who treat lung cancer were surveyed with the identical instrument as 2008 plus 3-11 questions at the end including Cataldo Lung Cancer Stigma Scale (Cataldo, 2011) strongest-loaded items for the patient survey. The survey was administered by phone and online during summer 2018.

      4c3880bb027f159e801041b1021e88e8 Result

      General lung cancer awareness has significantly improved in a decade with 94% of the public reporting familiarity with lung cancer, every segment reporting increased media visibility (65%, 78%, 85% for public, patients, and oncologists, respectively), and patients reporting significantly increased use of advocacy organizations (39% vs 18%, p<.05). Additionally, significantly more oncologists reported having adequate treatment options to prolong patients’ lives (52% vs 31%, p<.05) and most patients reported satisfaction with medical care (87%) and treatment options (71%).

      Despite these advances, stigma remains a critical problem. In 2018, significantly more of the public believed lung cancer patients are viewed/treated differently than other cancer patients (37% vs 31%, p<.05) and a similar proportion (56%) felt patients are partly to blame for their illness. Oncologists continue to believe there is stigma associated with lung cancer (68%) although more felt stigma was lower for never-smokers. More oncologists indicated patients blame themselves (67% vs 57%). Patients reported significant increases (p<.05) in presence of stigma associated with lung cancer (70% vs. 54%), lung cancer patients being treated differently by society (63% vs. 45%), having personally been treated different by society (43% vs 25%), and loved ones would be more supportive if they had a different type of cancer (25% vs. 11%).

      8eea62084ca7e541d918e823422bd82e Conclusion

      After a decade of lung cancer research progress, results indicate considerably elevated awareness. Unfortunately, disease stigma remains. Interestingly, stigma is reported more frequently by lung cancer patients and may be felt more acutely, perhaps due to increased awareness and empowerment. This work underscores the need to address stigma with proactive multilevel approaches (Hamann, 2018).

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    MA17 - New Methods to Improve Lung Cancer Patients Outcomes (ID 918)

    • Event: WCLC 2018
    • Type: Mini Oral Abstract Session
    • Track: Nursing and Allied Professionals
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/25/2018, 13:30 - 15:00, Room 205 AC
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      MA17.02 - Early Accrual to a Precision Lung Cancer Survivorship Intervention: The Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program (Now Available) (ID 14179)

      13:35 - 13:40  |  Author(s): Maureen Rigney

      • Abstract
      • Presentation
      • Slides

      Background

      Recent advances in early detection and treatment of lung cancer have created a need for survivorship care interventions to reduce the psychosocial and symptom burden of lung cancer, but few interventions address the unique experience of lung cancer survivors and their caregivers. Leveraging shared decision making and motivational interviewing, the Kentucky LEADS Collaborative developed a precision psychosocial intervention addressing the unique experiences and challenges of individuals diagnosed with lung cancer and their caregivers. This sub-study describes the demographic, diagnostic, and psychosocial characteristics of the initial participants in the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      Participants include 61 lung cancer survivors across 9 lung cancer care sites in Kentucky, USA. Data were drawn from baseline surveys of demographic characteristics, disease/treatment information, symptom burden, psychosocial functioning and quality of life administered to lung cancer survivors and caregivers enrolled in the single-arm intervention trial.

      4c3880bb027f159e801041b1021e88e8 Result

      Of the first 61 LC survivors enrolled, 32 had a caregiver join them as participants in the intervention (53%). Participants had a mean age of 62 years. Approximately 20% of LC survivors did not have a caregiver available to participate, and 27% declined to invite a caregiver join the program. Most participating caregivers were spouses (63%), but siblings (10%) and children (19%) were also included. Most survivors were female (66%), Caucasian (97%), and covered by health insurance (95%), and 59% were married or living in a committed relationship. Most participants had been diagnosed with non-small cell lung cancer (84%) and late-stage disease (IIIB-IV; 53%). Most participants had a history of smoking (95%); 30% had smoked within the past 30 days, and 29% were current smokers. Among current smokers, participants reported very high levels of quit planning (9.23±2.77) and quitting confidence (9.14±2.89). Finally, approximately 55% reported clinically significant distress, with a mean level of distress of 3.98 (2.99) on a scale from 0-10.

      8eea62084ca7e541d918e823422bd82e Conclusion

      Early accrual to the trial has exceeded expectations. Most survivors had advanced disease and reported significant distress. A substantial minority continued to use tobacco. Data suggest that modifications made to the survivorship approach emphasizing empathy and patient preference may help improve intervention acceptability and feasibility. Subsequent analyses will evaluate the impact of the intervention on quality of life, psychosocial functioning, and symptom burden. Data will also be collected regarding acceptability of the intervention and potential program changes to optimize benefits.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    MTE17 - Living with and Beyond Lung Cancer: An Education for Advocates (Ticketed Session) (ID 827)

    • Event: WCLC 2018
    • Type: Meet the Expert Session
    • Track: Advocacy
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/25/2018, 07:00 - 08:00, Room 206 BD
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      MTE17.01 - Living with and Beyond Lung Cancer: An Education for Advocates (Now Available) (ID 11575)

      07:00 - 08:00  |  Presenting Author(s): Maureen Rigney

      • Abstract
      • Presentation
      • Slides

      Abstract

      Who is this session for?

      This session is aimed at lung cancer advocates, including members of healthcare teams and advocacy organisations. The session will be an interactive discussion on living with and beyond lung cancer. Key topics include an introduction to survivorship, issues for lung cancer survivors, interventions and a global discussion on how advocates can address the needs of lung cancer survivors in their country. The session will be jointly presented by both authors.

      Background:

      Lung cancer has been the most common cancer in the world for several decades with an estimated 1.8 million new cases in 2012 (IARC, 2018). Sadly lung cancer is the leading cause of cancer deaths worldwide. Every year, lung cancer causes more than 1.6 million deaths; more than breast, colon and prostate cancers combined (IASLC, 2015).

      However there are lung cancer survivors. According to the Concord study (2015) 5-year net survival from lung cancer is typically low, in the range of 10–20% for most geographical areas. This study is the most comprehensive international comparison of cancer survival to date, covering countries that are home to two-thirds of the world’s population and shows extremely wide differences in survival between countries.

      Anyone who has been diagnosed with cancer is a survivor – from the time of diagnosis to the end of life. Caregivers and family members are also cancer survivors (National Coalition for Cancer Survivorship, 1986). For the purpose of this session, we will focus on lung cancer patients who are post treatment.

      Unmet needs:

      The impact of a cancer diagnosis can evoke a range of emotions, anything from fear, anxiety, anger or denial. There is no right or wrong way to feel and patients often describe it as being on ‘an emotional rollercoaster.’ A study performed by Zabora et al. in 2001 examined the prevalence of psychological distress by cancer site and found considerable variation. Of the patients surveyed, 43% of lung cancer patients experienced elevated levels of distress in comparison to 32% of breast cancer patients, 31% of bowel cancer patients and 30% of prostate cancer patients. Numerous studies have since replicated these results. And being off treatment does not imply less distress for lung cancer survivors (Eichler, 2018).

      Lung cancer survivors' health related quality of life is generally low; therefore, management is crucial during the posttreatment period. The experience of having unmet supportive care needs is most strongly associated with intrusive cancer-related thoughts, limitations in physical functioning, distress associated with physical symptoms, and health-care satisfaction (Sanders et al., 2010).

      Issues for post treatment survivors:

      The concept of quality of life has become a core concern for many healthcare professionals (Brennan, 2004). Surviving cancer does not always result in a return to ‘normal life’. The impact of a diagnosis can affect the overall quality of life of a survivor, including physically, psychologically and socially (Ivers, M. et al., 2009). For the purpose of this presentation, we will focus on post-treatment survivors and outline concerns real lung cancer survivors have expressed, including:

      Expectations

      Avoiding Triggers

      Anxiety Volume

      Guilt

      The Meaning of My Lung Cancer Experience

      Who/What Am I

      Social Disconnections

      Vulnerability

      Interventions:

      Psychosocial interventions with cancer patients usually focus on adaption and adjustment to diagnosis and treatment, helping the patient to engage in behaviours that are more conducive to better health (Neuz & Neuz, 2007). We will outline a variety of interventions that are successfully used to support lung cancer patients, including:

      CBT

      Focusing on Current Facts

      Staying In the Moment

      Talk Therapy

      Managing and Creating New Expectations

      Lowering the Anxiety Volume

      Re/Building Self-Esteem

      Socialization Exercises

      Global variations:

      There are wide variations in survival rates globally and this in turn impacts the work priorities of advocates. Both authors will present on lung cancer survival in their own country, demonstrating different unmet needs and priorities. The audience will then be invited to discuss key survivorship concerns within their organisations and given an opportunity to share their own survivorship initiatives and projects.

      Conclusion:

      Following group discussion, the authors will present some top tips on advocating for lung cancer survivors and direct the audience to useful resources.

      References:

      IARC (2018) Globocan 2012: Estimated Cancer Incidence, Mortality and Prevalence Worldwide. Available at: http://globocan.iarc.fr/Pages/fact_sheets_cancer.aspx

      IASLC (2015) 2015 Lung Cancer Factsheet. Available at: https://www.iaslc.org/lung-cancer-fact-sheet-2015-europe

      Allemani, C. et al. (2015) Global surveillance of cancer survival 1995 – 2009: analysis of individual data for 25 676 887 patients from 279 population-based registries in 67 countries (CONCORD-2). The Lancet, 385, March 14, 2015. Available at: https://www.ncri.ie/sites/ncri/files/pubs/papers/Globalsurveillance_CONCORD2.pdf

      National Coalition for Cancer Survivorship (1986) NCCS Charter. Available at: https://www.canceradvocacy.org/news/defining-cancer-survivorship/

      Zabora et al. (2001) The prevalence of Psychological Distress by cancer site. Psycho-Oncology, 10, 19 – 28.

      Sanders, SL. Et al. (2010) Supportive care needs in patients with lung cancer. Psycho-Oncology 19 (5) 480‐489.

      Eichler, M. et al. (2018) Psychological distress in lung cancer survivors at least 1 year after diagnosis—Results of a German multi-center cross sectional study. Psycho‐Oncology. 1–7.

      Brennan, J. (2004). Cancer in Context: A practical guide to supportive care. Oxford: Oxford University Press.

      Ivers, M., Dooley, B. & Bates, U. (2009) Development, Implementation and Evaluation of a Multidisciplinary Cancer Rehabilitation Programme. The CANSURVIVOR Project: meeting post-treatment cancer survivors’ needs. Dublin: Health Service Executive.

      Nezu, A.M., & Nezu, C.M. (2007). Psychological distress, depression and anxiety. In M.Feuerstein (Ed.), Handbook of cancer survivorship (pp. 323-338). New York: Springer.

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    P1.02 - Advocacy (Not CME Accredited Session) (ID 934)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 2
    • Now Available
    • Moderators:
    • Coordinates: 9/24/2018, 16:45 - 18:00, Exhibit Hall
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      P1.02-10 - "We Are Ambassadors for Survivors:" Experiences of Lung Cancer Support Group Attendees and Facilitators (Now Available) (ID 12296)

      16:45 - 18:00  |  Presenting Author(s): Maureen Rigney

      • Abstract
      • Slides

      Background

      Each year, 1.8 million people are diagnosed with lung cancer globally. Compared with other cancers, lung cancer patients experience higher levels of distress and have greater unmet physical and emotional needs.

      A significant unmet need is social support. Face-to-face support groups can meet this need and may increase feelings of control and decrease distress. While lung cancer patients tend to prefer lung cancer-specific over general cancer groups, for many reasons these groups can be challenging to start and maintain.

      The number of lung cancer support groups in the world is not known. In the US, where over 230,000 people are diagnosed annually, there are typically fewer than 100 groups running at any given time, and many of those are not thriving. The goal of this project was to solicit and compile the real-world experiences of lung cancer support group attendees and facilitators to increase the chance of success for new groups and provide struggling groups with tips and ideas that can be used anywhere in the world.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      The perspectives of support group attendees (patients, survivors and loved ones) and facilitators were gathered and analyzed.

      Attendee perspectives were gained through:

      -- 10 focus groups, with questions related to motivation for group attendance, group benefits and suggestions to improve the group

      -- Analysis of 17 pre- and post- attendance questionnaires to measure group impact

      -- A review of relevant literature

      Facilitator perspectives were gained through:

      -- A 21 question online survey to 131 lung cancer support group facilitators, 7 in Australia, 42 in the United Kingsom nd 82 in the United States, with questions related to greatest challenges in group startup and maintenance and soliciting creative solutions used to overcome difficulties

      -- In-depth interviews with two successful facilitators

      -- A review of relevant literature

      4c3880bb027f159e801041b1021e88e8 Result

      Results have been analyzed and categorized according to benefits of group attendance, facilitator perspectives and identifcation of challenge and solution themes. The most difficult issue for facilitators is getting the word out and maintaining attendance. A clear benefit to attendees is the opportunity to join with others who truly understand their experiences.

      8eea62084ca7e541d918e823422bd82e Conclusion

      Only through listening to both lung cancer support group facilitators and attendees can we identify indicators of group success. The results of this project are diseminated to help facilitators of new groups consider a number of factors known to foster successful groups and provide direction to facilitators of groups that are struggling, anywhere in the world.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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      P1.02-11 - Lung Cancer Symptom Awareness: Findings from a Global Consumer Survey (Now Available) (ID 12919)

      16:45 - 18:00  |  Presenting Author(s): Maureen Rigney

      • Abstract
      • Slides

      Background

      Diagnosed early, lung cancer outcomes are more positive. Absent national screening programs, symptom recognition is critical. In 2017, the Global Lung Cancer Coalition (GLCC) commissioned Populus to undertake an international consumer survey of symptom awareness in each of the 25 member countries.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      In July 2017, 1,000 adults, in each of 25 countries, were asked (unprompted) to name as many symptoms of lung cancer as they could. Findings were analysed to determine any correlation between symptom awareness and country income, using World Bank data.

      4c3880bb027f159e801041b1021e88e8 Result

      There was no correlation between the country’s income and symptom awareness (Figure 1). Four out of ten people (42%) were unable to name any symptoms of lung cancer. On average, people could only name one or two symptoms of lung cancer. The three most commonly named symptoms were coughing (38%), shortness of breath (35%) and coughing up more blood, spit or phlegm (15%).

      figure 1 average number of symptoms mentioned.png

      8eea62084ca7e541d918e823422bd82e Conclusion

      No country has room for complacency on lung cancer symptom awareness, irrespective of country income. Approaches in countries with higher symptom recognition, like Mexico, should be examined for lessons. More must to be done to reach and educate those who cannot name any symptoms of lung cancer to encourage symptom recognition and earlier presentation.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    PR01 - Press Conference (ID 872)

    • Event: WCLC 2018
    • Type: Press Conference
    • Track:
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/23/2018, 16:00 - 17:30, Room 202 BD
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      No Longer Outliers: Understanding the Needs of Long-Term Cancer Survivors (Now Available) (ID 14873)

      16:21 - 16:29  |  Presenting Author(s): Maureen Rigney

      • Abstract
      • Presentation
      • Slides

      Abstract not provided

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