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Diego Villalón

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    MA22 - Partnering with Patients to Understand Stigma, Disparities and Values Leading to Improved Lung Cancer Care (ID 154)

    • Event: WCLC 2019
    • Type: Mini Oral Session
    • Track: Advocacy
    • Presentations: 12
    • Now Available
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      MA22.01 - Lung Cancer Patients’ Unique Values and Preferences Lead to Clinical Trial Preferences (Now Available) (ID 2639)

      15:45 - 17:15  |  Presenting Author(s): Andrew Ciupek  |  Author(s): Cara Kraft, Jennifer C. King

      • Abstract
      • Presentation
      • Slides

      Background

      Only about 5% of cancer patients participate in clinical trials. We previously conducted a survey of U.S. lung cancer patients and found that only 22% reported discussing clinical trials with their oncologist at the time of making treatment decisions. We hypothesize these low rates of trial discussion and participation may be due in part to current clinical trial designs not reflecting unique values and preferences of lung cancer patients that differ from other non-cancer conditions.

      Method

      Utilizing an online survey inquiring about clinical trial attitudes of patients with several different clinical diagnoses in the United States, we chose to compare a group of lung cancer patients (LC group) to patients diagnosed with a non-cancerous condition (chronic allergies or asthma) (AA group). 229 participants in the LC group and 367 in the AA group were asked to indicate the personal impact of several information sources for finding out about clinical trials and several potential motivators for clinical trial participation.

      Result

      The LC group reported the doctor’s office as their main information source for clinical trials, while the AA group indicated advertisements as their primary source for finding out about trials. In terms of motivation to join trials, 60% of the LC group said having their doctor’s support for joining a given trial was very important to them (only 33% of the AA group said so). Being paid for participation was reported as being motivating by 69% of the AA group versus only 23% of the LC group. When asked about what they valued when looking for a clinical trial, the LC group said extending quality and length of life and receiving access to otherwise unavailable therapy options were very important. The AA group placed much less importance on these same values.

      Conclusion

      We should consider the unique ways lung cancer patients seek information and what they value when designing a strategy to recruit to or educate about a clinical trial. Effective, tailored strategies may include increasing the use of providers as primary trial educators and focusing outreach surrounding trials on lung cancer patient motivators that differ from those with other diagnoses.

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      MA22.02 - The Impact of Patient Engagement on Study Design and Patient Recruitment in a Pragmatic Trial to Improve Cancer Care Delivery (Now Available) (ID 2388)

      15:45 - 17:15  |  Presenting Author(s): Bernardo Haddock Lobo Goulart  |  Author(s): Ari Bell-Brown, Sean D Sullivan, Gary Lyman, Dawn L Hershman, Kate Watabayashi, Karma Kreizenbeck, Sarah Shirley, AnneMarie Ciccarella, Guneet Walia, Judy Johnson, Carol Seigel, Ginny Mason, Florence Kurttila, Barbara Segarra-Vazquez, Scott D Ramsey

      • Abstract
      • Presentation
      • Slides

      Background

      SWOG trial S1415CD is a pragmatic study comparing outcomes of Colony Stimulating Factor (CSF) use in usual care with care that uses guideline-informed standing CSF orders. A 21-person External Stakeholder Advisory Group (ESAG), including 10 patient partners, has informed the design, implementation, recruitment and dissemination planning for the study. Recruitment has been a challenge for study sites, specifically around approaching and consenting patients in the window between diagnosis and first cycle of chemotherapy. This abstract explores the impact of the ESAG patient partners on the patient recruitment process for S1415CD.

      Method

      Patient partners are convened each year over monthly teleconferences, one in-person meeting and targeted email communication. Patient partner input from 2014-present has been tracked and reviewed for impact on the patient recruitment process. After the start of accrual in October 2016, a teleconference was held in spring 2017 focused on barriers to patient accrual, specifically patient approach. Study sites submit monthly screening logs detailing reasons for patient ineligibility.

      Result

      Prior to the start of accrual, patient partners collaborated with the research team to create 2 resources to assist clinic staff with presenting the trial in lay terms: a patient brochure and a summary handout for clinical research associates (CRAs). CRAs reported high use of the brochure as a valuable, simple tool for explaining the trial to eligible patients. Patient partners were also engaged in developing consent forms for trial participants. In addition, patient partners developed strategies for approaching patients in the timeframe between diagnosis and first cycle of chemotherapy which were compiled into a document for study sites and incorporated into the trial’s frequently asked questions. Between October 2016-June 2017, the approach and consent process (i.e. the inability to consent patients in the narrow timeframe) accounted for 22% of all reported ineligible patients, however after the implementation of patient-formulated strategies, during June 2017-December 2018, the approach and consent process has accounted for only 10% of all reported ineligible patients.

      Conclusion

      Sustained engagement and active participation of patient partners throughout S1415CD has provided unique experiential knowledge and feedback to improve the patient approach and consent process across study sites, leading to increased opportunities for patient recruitment. Engaging patient partners early and throughout the study design and conduct phases of the research has been successful in providing patient-centered solutions to recruitment and implementation challenges, including the challenge of timing, to ensure success in reaching the study accrual goals.

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      MA22.03 - The ROS1ders: Partnering to Drive Research and Improve Outcomes in ROS1+ Cancers (Now Available) (ID 2751)

      15:45 - 17:15  |  Presenting Author(s): Janet Freeman-Daily  |  Author(s): Lisa Goldman, Lysa Buonnano, Tori Tomalia

      • Abstract
      • Presentation
      • Slides

      Background

      ROS1 fusions are found in a dozen types of cancer. However, these fusions are rare, occurring in a small fraction of patients (e.g.,1%-2% of non-small cell lung cancer). The small population hampers gathering sizeable patient cohorts and investment in medical research. The ROS1ders are a group of patients and caregivers dealing with ROS1-positive (ROS1+) cancer who strive to better outcomes for all ROS1+ cancers by supporting patients and caregivers, increasing awareness and education, accelerating research, and improving access to effective diagnosis and treatment.

      Method

      We created a private ROS1+ Facebook group for sharing personal information and support among patients and caregivers. We created a public Facebook group for outreach. We launched a website at ROS1cancer.com to share sourced information about ROS1 drugs, clinical trials, expert clinicians, and research developments as well as patient blogs and tips for living with our disease. We attended medical conferences and met with cancer advocacy organizations, clinicians, researchers, and industry; we collectively began working on projects to accelerate research into our disease through the Global ROS1 Initiative. We are active in developing and implementing our projects as well as serving as fundraisers and the ROS1+ public face.

      Result

      The ROS1ders is the largest cohort of ROS1+ patients and caregivers ever collected. We add new members weekly, and have grown to include 400+ members from 28 countries. We network with ROS1+ communities who communicate in languages other than English in Europe, China and Japan. Expert ROS1 clinicians collaborate with us to ensure we provide accurate information about our disease in our Facebook groups and our website. ROS1+ patients have donated fresh tissue and pleural fluid specimens to the ROS1 Cancer Model Project to create cell lines and patient-derived xenograft (PDX) mice; the resulting cell lines have been shared with several institutions in academia and industry. We have contributed data to an epidemiological study. We are collaborating to develop a registry-based study of blood clots in ROS1+ and other lung cancer patients. Some ROS1ders are developing new projects in their home countries.

      Conclusion

      The ROS1ders are breaking new ground, sharing current information, collecting data and biospecimens from ROS1+ patients, and enabling research and development of treatments for our cancer in ways that were not possible before. The Global ROS1 Initiative is truly a partnership between patients, caregivers, advocacy organizations, clinicians, researchers, and industry.

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      MA22.04 - Discussant - MA22.01, MA22.02, MA22.03 (Now Available) (ID 3809)

      15:45 - 17:15  |  Presenting Author(s): Kazuo Hasegawa

      • Abstract
      • Presentation
      • Slides

      Abstract not provided

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      MA22.05 - Assessment of Gender Differences in the Psychosocial and Economic Impact on Patients with Stage IV Non-Small Cell Lung Cancer (Now Available) (ID 718)

      15:45 - 17:15  |  Presenting Author(s): Pilar Garrido  |  Author(s): Rosario Garcia Campelo, Margarita Majem, Enric Carcereny, Dolores Isla, Jose Luis Gonzalez Larriba, Juan Coves, Javier De Castro Carpeno, Manuel Dómine, Pilar Lianes, Oscar Juan, Josefa Terrassa, Mariano Provencio, Ana Blasco, Jose Garcia, ramon Garcias De Las Peñas, Angel Artal, Jordi Remon, Silvia Catot, Enriqueta Felip, Nuria Viñolas

      • Abstract
      • Presentation
      • Slides

      Background

      Incidence of lung cancer in women is rising overtime reporting evident gender-based differences in epidemiology, biology, and treatment outcome. However, little is known about gender-differences regarding psychological, economic and social aspects. The objectives of this prospective study are to evaluate the psychosocial and economic impact of metastatic non-small cell lung cancer (NSCLC), according to gender. Additionally, to assess the emotional burden and the economic impact of the disease on the primary caregiver from a gender perspective

      Method

      Multicenter, prospective, observational, study of two cohorts of patients with metastatic NSCLC (male and female) in Oncology departments of 20 Spanish hospitals. The following measurement tools were used: the APGAR questionnaire (family functionality: adaptability, partnership, growth, affection, and resolve), the Relationship impact scale, the DUKE-UNC scale (perceived socio-affective support), the patient and the caregiver economic impact scale and the Zarit scale (caregiver burden). All questionnaires were performed at the first visit, repeated 4 months later and following the first and second disease progression.

      Result

      Of the 333 pts included, 104 were females and 229 male, of whom 63% and 97%, respectively, were smokers/ex-smokers (p=0.0001). More women than men (85% vs 70%) had adenocarcinomas . The median overall survival was longer in women but did not reach statistical significance [17.1 vs 11.0 months, HR 0.732 (95% CI 0.534 to 1.005), p=0.0524]. Most families considered themselves functional (high score in APGAR questionnaire) with no changes in their partner relationship and social support was evaluated as optimal for majority of patients. Around a quarter of interviewed patients said their economic situation was a little worse after the lung cancer diagnosis, without remarkable differences by gender. Statistically significant differences were found between both groups regarding the caregiver´s relationship to the patient (more parents were the caregiver in females than in males) (p <0.0001) and the caregiver’s employment situation (more employed caregivers in females) (p<0.0001). Most caregivers of both sexes considered that taking care of their relative did not pose a significant burden. No remarkable differences by gender were found between the different variables across the study.

      Conclusion

      This study provides a preliminary insight into gender-related characteristics in the management of advanced NSCLC and its impact on the emotional, social and economic burden of patients and their caregivers, and recall the high priority of researching in cancer from a gender perspective

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      MA22.06 - Longer Lung Cancer Time Intervals Amongst Culturally and Linguistically Diverse Patient Than Anglo-Australian Patients  (Now Available) (ID 3103)

      15:45 - 17:15  |  Presenting Author(s): Kenneth John O’Byrne  |  Author(s): Danielle Mazza, Xiaoping Lin, Jon Emery, Fiona Walter, Jane Young, David Barnes, Paul Mitchell, Bianca Brijnath, Andrew Martin

      • Abstract
      • Presentation
      • Slides

      Background

      Lung cancer is the leading cause of cancer mortality worldwide. Culturally and Linguistically Diverse (CALD) patients are especially vulnerable, with poorer outcomes than non-immigrant patients. The LEAD (Lung cancer diagnostic and treatment pathways: A comparison between CALD and Anglo-Australian patients) study aimed to measure and compare the lung cancer diagnostic and treatment pathways between CALD and Anglo-Australian patients.

      Method

      LEAD is a mixed-method, observational cohort study. The presentation reports findings from the quantitative arm comprising a patient questionnaire and reviews of patients’ hospital and general practice records. A total of 577 (407 Anglo-Australian and 170 CALD) patients were recruited from Melbourne, Sydney and Brisbane, and their hospital records were reviewed. The questionnaire was returned by 189 patients (135 Anglo-Australian and 54 CALD) and a record review was completed by the General Practitioners (GPs) of 99 patients (76 Anglo-Australian and 23 CALD). Survival and Cox regression analyses were conducted to examine differences in time intervals between the two groups. LEAD is funded by Cancer Council Australia with the assistance of Cancer Australia.

      Result

      CALD patients reported longer time intervals from referral to diagnosis (Median = 30 days, 95% CI = 26 - 34) than Anglo-Australian patients (Median = 17, 95% CI = 14 - 20), p =. 003, Exp (B) = 1.32. This difference persisted after the impact of relevant factors, such as age and stage of lung cancer, was taken into consideration. CALD patients also reported longer time in five other intervals, including from 1) symptom notification to GP presentation, 2) GP presentation to referral, 3) referral to treatment, 4) symptom notification to treatment, and 5) symptom notification to diagnosis. However, the differences in these five intervals failed to reach significance.

      Conclusion

      LEAD is the first Australian study to comprehensively measure and compare the time intervals along the lung cancer pathways amongst CALD and Anglo-Australian patients. It found that CALD patients have longer time intervals from referral to diagnosis than Anglo-Australian patients.

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      MA22.07 - A Culturally Safe Advocacy Model of Care for Inuit Cancer Patients and Their Families (Now Available) (ID 448)

      15:45 - 17:15  |  Presenting Author(s): Carolyn Roberts  |  Author(s): Chantal Bornais, Paul Wheatley-Price, Tim Asmis, Garth Nicholas, Gwen Barton

      • Abstract
      • Presentation
      • Slides

      Background

      The Ottawa Hospital is the tertiary care center for Inuit living in the Baffin Island region of Nunavut, in Canada’s far North. Inuit – once relatively cancer free – now have among the highest lung cancer rates in the world (Young et al., 2016). Approximately 30% of Inuit diagnosed with cancer between 2000 and 2010 did not access any cancer services (Asmis, 2016), for which they must travel thousands of kilometers where they are displaced from family, community and culture.

      Colonization has had a detrimental impact on the social determinants of health for Inuit in Nunavut and has created a lack of trust in government institutions. This context creates an advocacy need at the individual and systems level to address access and equity issues, with the goal of advancing positive health outcomes.

      Method

      The Champlain Indigenous Cancer Program (CICP) team has developed a patient-centered, culturally appropriate, land-based approach to support Inuit patients using the principles of the “Supportive Care Framework” (Fitch, 1994) as a guiding ideology. Recognizing the social and economic inequities (Inuit Tapiriit Kanatami, 2019), the Nurse Navigator developed an unconventional approach to connect with Inuit patients. She prioritizes developing therapeutic, trusting relationships with patients and families based on the observation that Inuit patients often feel most comfortable outside the confines of a hospital office. Developing these relationships on the land has become a cornerstone of her work.

      Result

      The approach that the CICP has implemented has achieved far-reaching success. Between the first six months and latest six months of tracking (through 2017-2018) there has been a 400%+ increase in patient encounters with the Nurse Navigator role. Clinicians report an increased awareness and understanding of the unique context of Inuit patients and families, resulting in increased numbers of referrals to CICP. Within the Inuit community, there is a recognition and appreciation of the Inuit-specific approach, leading to an increase in self-referrals.

      Conclusion

      The CICP is continuing to actively pursue tracking and reporting initiatives to demonstrate a shift in access to cancer care and the long-term outcomes for Inuit patients and families. The program is also continuing to increase access to cultural awareness education for staff to combat misunderstandings about Inuit. By sharing experiences and stories garnered through this work, the Nurse Navigator will help attendees to question and redefine the perception of the traditional role of a cancer nurse.

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      MA22.08 - Discussant - MA22.05, MA22.06, MA22.07 (Now Available) (ID 3810)

      15:45 - 17:15  |  Presenting Author(s): Clarissa Baldotto

      • Abstract
      • Presentation
      • Slides

      Abstract not provided

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      MA22.09 - Challenging Negative Stereotypes Around Lung Cancer in Ireland (Now Available) (ID 1849)

      15:45 - 17:15  |  Presenting Author(s): Anne-Marie Baird  |  Author(s): Jennifer Cimerman, Helen Forristal, Liz Yeates

      • Abstract
      • Presentation
      • Slides

      Background

      In excess of 2,500 people in Ireland receive a lung cancer diagnosis each year, with over 1,800 people dying from the disease. However, general awareness around lung cancer and its associated symptoms are low. This combined with a lack of screening, and the perceived stigma around the disease contributes to the majority of patients presenting with late stage disease. With this in mind, the Marie Keating Foundation launched the ‘I Am Lung Cancer’ campaign to challenge negative stereotypes and perceptions around lung cancer and increase awareness of early signs and symptoms.

      Method

      This project consisted of (i) an online survey to assess knowledge of, and attitudes towards lung cancer and (ii) an awareness campaign. The survey was designed by the Marie Keating Foundation and conducted by Empathy Research across a nationally representative sample of 1,017 adults aged 18 or older. Quotas were placed on gender, age, social class and region with weighting applied to ensure final data was representative of these quotas. The multifaceted ‘’I Am Lung Cancer’ campaign was headed by three ambassadors who have been impacted by lung cancer, and included a radio advertisement, video, updated website content and a social media campaign to promote key campaign messages.

      Result

      Data from the survey demonstrated that less than one in five (16%) Irish adults claim to be well informed when it comes to the signs and symptoms of lung cancer. In terms of attitudes around lung cancer, over a quarter (27%) believe that non-smokers who developed lung cancer should have their treatment prioritised over those who had a smoking history. Almost a fifth (17%) of the Irish public believe that health insurers shouldn’t cover treatment for patients with lung cancer who smoke. Just over a third (34%) agreed that patients with lung cancer face stigma from the public that other patients with cancer don’t face; with one in 10 finding this stigma acceptable. The three ambassadors were central to all aspects of the #IAmLungCancer campaign, with good coverage across national print and broadcast media (reach over 3 million) and online media. On Facebook the campaign reach was over 190,000 and 48,000 on Twitter, with good engagement from the public.

      Conclusion

      This research identified a worrying lack of symptom awareness as well as distressing attitudes towards people impacted by lung cancer. We believe that the campaign, which humanises lung cancer helped to tackle both of these important issues.

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      MA22.10 - The Role of Stigma in Differential Care for Lung Cancer Patients: A Decade of Patient and Oncologist Attitudes (Now Available) (ID 2540)

      15:45 - 17:15  |  Presenting Author(s): Jennifer C. King  |  Author(s): Eleni Rapsomaniki, Maureen Rigney

      • Abstract
      • Presentation
      • Slides

      Background

      The presence of lung cancer stigma is well documented (Chapple et al, 2004; Chambers et al, 2012; Marlow et al, 2015) and has been shown to impact the care and treatment of lung cancer survivors (Tod et al. 2008; Carter-Harris et al 2014). In 2008, a large survey of over 200 patients, 200 oncologists, and 1000 members of the general population revealed that most participants felt that lung cancer was principally caused by external factors, that it was preventable, and that lung cancer patients were at least partly to blame for their illness (Weiss et al. 2014; Weiss et al. 2017). The last decade has brought significant changes in the treatment paradigm for lung cancer but it was unknown if the perceptions that affect the care of lung cancer patients have changed.

      Method

      1001 members of the general public, 208 patients with lung cancer, and 205 oncologists who treat lung cancer were surveyed with the identical survey instrument from 2008 survey along with 5-15 additional questions at the end. The survey was carried out by phone and online between June 6 and July 26, 2018. Statistical analysis was performed comparing 2008 and 2018 datasets using paired t-tests if normally distributed or Mann-Whitney U tests for continuous data and Chi-squared or Fisher’s exact test for categorical data.

      Result

      In 2018, significantly more oncologists feel they have adequate treatment options for metastatic lung cancer (67% vs 36%, p<.001) and the majority of patients report being satisfied with their medical care (87%) and treatment options (71%).

      Nevertheless, significantly more patients felt that there was a stigma associated with having lung cancer (70% vs. 54%, p<.0001) and that society treats them differently (63% vs 45%, p<.0001). There was a non-significant increase in oncologists indicating that there is a stigma associated with lung cancer (68% in 2018 vs 60% in 2008) and that patients blame themselves (67% vs 57%).

      Despite the improvements in lung cancer treatment over the past decade, stigma is still evident in care for those with lung cancer. Similar to 2008, 57% of oncologists indicated that patients with different types of cancer were thought about, approached, or handled differently and lung cancer patients were most frequently cited. In 2018, more patients reported that patients with lung cancer are treated differently by doctors and nurses (40% vs. 26%, p=.01). For both groups, the most common differential treatment referenced was “received less sympathy from medical staff.”

      Conclusion

      After a decade of research progress in lung cancer, stigma surrounding the disease remains a critical problem even in a healthcare setting. Patients are perceiving stigma at higher levels and oncologists are not reporting any improvement. This work underscores the need to address stigma with proactive multilevel approaches including the need for medical providers to practice empathic communication.

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      MA22.11 - An Empathic Communication Skills Training Module to Reduce Lung Cancer Stigma in Patients with Lung Cancer: Pilot Results   (Now Available) (ID 1725)

      15:45 - 17:15  |  Presenting Author(s): Jamie Ostroff  |  Author(s): Smita Banerjee, Noshin Haque, Carma Bylund, Megan Shen, Maureen Rigney, Heidi Hamann, Patricia Parker

      • Abstract
      • Presentation
      • Slides

      Background

      Most patients diagnosed with lung cancer report experiencing stigma, with 48% reporting stigma attributable to interactions with health care clinicians. Lung cancer stigma may result in multiple negative psychological outcomes such as misreporting and underreporting of symptoms and smoking behaviors and avoidance of help-seeking. One promising intervention strategy for reducing patients’ experiences of lung cancer stigma is improving empathic communication in lung cancer patient-clinician interactions. This abstract describes the conceptual model, development, and preliminary evaluation of a clinician-targeted empathic communication skills training to reduce lung patient’s experience of stigma.

      Method

      The goal of this new training module was to enhance responsiveness to lung cancer patients’ expression of stigma and psychological distress focusing on greater use of seven communication strategies: agenda setting, history taking, recognizing or eliciting a patient’s empathic opportunity, shared understanding of the patient’s emotion/experience, empathic responding, coping and connection to social support, and closing the conversation. Participating cancer care clinicians learned specific communication skills such as providing a rationale for tobacco use discussion, normalizing, acknowledging, preparing patients for recurring smoking questions, and encouraging expression of feelings. The 2-hour training module was delivered to thoracic oncology clinicians (physicians, advanced practice clinicians) (n=28) using a brief didactic presentation (30 min) with exemplary video demonstrations, followed by experiential role play exercises (90 min) with standardized patients.

      Result

      We examined preliminary efficacy of the empathic communication module by assessing participant evaluation of the training and their perceived self-efficacy before and after the training. Overall, participating clinicians reported favorable evaluations of the training, with 93% participants agreeing or strongly agreeing to all 12 training module evaluation items. Of note, perceived self-efficacy to communicate empathically with lung cancer patients increased significantly, t(27)=-4.42, p<.001 from pre- (M=3.64,SD=.68) to post-training (M=4.36,SD=.49).

      Conclusion

      Overall, results indicate that the new empathic communication skills training module was well received by thoracic oncology care clinicians and demonstrated significant improvements in self-efficacy from pre- to post-training. Examination of patient outcomes is needed.

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      MA22.12 - Discussant - MA22.09, MA22.10, MA22.11 (Now Available) (ID 3811)

      15:45 - 17:15  |  Presenting Author(s): Lisa Carter-Harris

      • Abstract
      • Presentation

      Abstract not provided

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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: 1
    • Now Available
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      MA24.01 - Challenges in Lung Cancer Clinical Trials: A European Perspective  (Now Available) (ID 1873)

      14:30 - 16:00  |  Author(s): Diego Villalón

      • Abstract
      • Presentation
      • Slides

      Background

      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.

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