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J.C. King
Moderator of
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PA03 - Patient Support and Involvement in Research (ID 359)
- Event: WCLC 2016
- Type: Patient & Advocacy Session
- Track: Patient Support and Advocacy Groups
- Presentations: 4
- Moderators:J.C. King, P. Muszumanski
- Coordinates: 12/06/2016, 11:00 - 12:30, Schubert 6
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PA03.01 - Central European Lung Cancer Patient Network (CELCAPANET) (ID 6754)
11:00 - 11:15 | Author(s): F. Buchberger
- Abstract
- Presentation
Abstract not provided
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PA03.02 - Psycho-Social and Communication Needs of Cancer Patients: Romanian Results (ID 6755)
11:15 - 11:30 | Author(s): C.L. Dégi
- Abstract
- Presentation
Abstract not provided
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PA03.03 - How to Live with Lung Cancer? The Slovenian Lung Cancer Patient Support (ID 6756)
11:30 - 11:45 | Author(s): A.C. Škufca Smrdel
- Abstract
- Presentation
Abstract:
Background: Cancer Patient’s Association of Slovenia (CPAS) is a non-governmental organisation, connecting the patients with all cancer types as well as their relatives and health professionals. The central programme that is being offered to patients by CPAS for more than three decades is an organized self-help »On the way to recovery«, that offers support in self-help groups on 20 locations and peer-to-peer counselling in two Info centres. The lung cancer patients are entering the programme alongside the other cancer patients. The peer-to-peer support programme has developed the system of regular supervisions, initial education, the study material aimed at volunteers and the network of self-help groups spread over the Slovenia. The research analysing peer-to-peer support showed clear benefits for the patients[1,2]. Since 2014, the Lung Cancer Support Division is organised in the framework of CPAS. Its main aim is the development of the programmes for lung cancer patients and their relatives. In Slovenia, with roughly 2 million inhabitants, there are some 1230 new lung cancer patients every year, and 1100 deaths due to lung cancer[3]. Patients with lung cancer are treated in four oncological centres (Institute of Oncology Ljubljana, University Clinic Golnik, University Medical Centres Ljubljana and Maribor). Among the burdens, all cancer patients are carrying, such as confronting its own vulnerability, mortality, coping with the hardships of treatment, psychic distress often combined with the fear of recurrence, lack of social support and changes in financial situation, some are disease specific. The burdens lung cancer patients are experiencing are connected with the poor prognosis, poorer quality of life and greater symptom management needs. These are due to physical troubles, social presentation of lung cancer as death sentence, sense of guilt and stigmatisation, but are also due to the need of information regarding new treatments available[4–6]. To be able to react on the specific lung cancer patient’s needs, we have within the Lung Cancer Support Division supplemented volunteer self-help programme »On the way to recovery« with the programme »How to live with lung cancer« [7]. How to live with lung cancer is a one-day programme, which is being implemented in various also smaller places and medical institutions throughout the Slovenia. It is aimed at lung cancer patients, their relatives and also health providers. The programme is carried out through recognized consultants working with lung cancer (surgeons, medical oncologists, radiation oncologists, physiotherapists, nurses and clinical psychologists from the medical institutions treating lung cancer). Methods: All participants in the programme were given a specific designed evaluation questionnaire. We present an evaluation from the program participants in the year 2016. We analysed the participants’ responses and the evaluation will be used in further program development. Results: The participants are being highly satisfied by the programme as whole and also with the individual sets of lectures. They are highly appraising the help our programme is providing in understanding the health situation, communication with the health professionals and in understanding coping processes. The programmes main goal is to inform participants on the lung cancer diagnostics, treatment and the rehabilitation possibilities. This information is given by the relevant professional. There is a special emphasis on the new and more efficient treatment possibilities. The programme presents in depth the ways and the means for the optimal coping with the disease and its treatment and also the advices for the living with the disease. We are widening the importance of comprehensive patient treatment, informing on psycho social considerations, possibilities on entering the CPAS programmes (and also related programmes that are offered locally), we are informing on benefits of early inclusion in the palliative care thus busting the myths regarding the palliative care. Except for presenting information, the programme’s goal is also the social support for lung cancer patients, as a large amount of the time is set by for the talk and the exchange of experiences among the participants. The inclusion of different professions into the comprehensive care of cancer patients due to the patients’ needs is being represented on the symbolic level with the joint presentation, where the presenters are alternating thus rounding up the “story” of treatment and rehabilitation. Incorporated in this programme is also a chance for the patients and their relatives to have an individual conversation with the medical professionals regarding their treatment and dilemmas. While the programme is being primarily aimed at the patients and their relatives, the local medical professionals are also invited. This beside the information point of view gives them also a chance to interact with the presenters and an opportunity to discuss with them their questions and dilemmas. Through this we are trying to ensure the equal availability of treatment and to approach the people with medical and psycho social support. Conclusions: With this programme we are following all three fields where the peer support programmes have been found to be beneficial to patient. Namely, their informational needs about the cancer and its treatment, management of emotional distress and finally the facilitation of empowerment [1,2]. REFERENCE: 1. Meyer A, Coroiu A, Korner A. One-to-one peer support in cancer care: a review of scholarship published between 2007 and 2014. Eur J Cancer Care (Engl). 2015;24(3):299-312. 2. Campbell HS, Phaneuf MR, Deane K. Cancer peer support programs-do they work? Patient Educ Couns. 2004;55(1):3-15. 3. Studio N. Rak v Sloveniji 2012 Cancer in Slovenia EPIDEMIOLOGIJA IN REGISTER RAKA EPIDEMIOLOGY AND CANCER REGISTRY. 2016. 4. Missel M, Pedersen JH, Hendriksen C, Tewes M, Adamsen L. Diagnosis as the First Critical Point in the Treatment Trajectory: An Exploration of Operable Lung Cancer Patients’ Lived Experiences. Cancer Nurs. 2015;38(6):E12-21. 5. Pujol J-L, Mérel J-P, Roth C. How preconceptions about lung cancer treatment interact with medical discourse for patients who accept chemotherapy? Psychooncology. July 2016. [Epub ahead of print] 6. Pozo CLP, Morgan MAA, Gray JE. Survivorship issues for patients with lung cancer. Cancer Control. 2014;21(1):40-50. Available at: http://www.ncbi.nlm.nih.gov/pubmed/24357740. Accessed August 21, 2016. 7. Čufer T., Simonič A., Koren P., Crnjac A, Računica K., Rajer M., Kovač V, Škufca Smrdel A. C. VPM. KAKO ZIVETI Z RAKOM_za splet-film. 2015. Available at: https://drive.google.com/file/d/0ByMyk7OmgaDSVzR3ME1vZzltbVU/view. Accessed Sept 20, 2016
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PA03.04 - Patient Involvement in the Evaluation of Cancer Medicines: The EMA Experience (ID 6758)
11:45 - 12:00 | Author(s): N. Bere
- Abstract
- Presentation
Abstract:
Patient involvement in the evaluation of cancer medicines; the EMA experience The European Medicines Agency (EMA) is the authority which evaluates and monitors medicines across all EU Member States. Pharmaceutical companies wishing to market a new cancer medicine in Europe are obliged to apply for a licence through the EMA. With a remit to ensure that European citizens are provided with safe and effective medicines, the EMA realised early on that patients’ experience with their disease and its treatment is a fundamental parameter to include within the evaluation of medicines. The Agency’s engagement with these stakeholders has been a progressive journey whereby a steady increase in the numbers involved (76 in 2007 to 740 during 2015) has been coupled with a diversification of methodologies ensuring opportunities all along the medicines lifecycle. Learning from experience has also been paramount to ensure that the interaction is mutually beneficial and is carried out in the most optimal manner possible. Key milestones of EMA interaction with patients and consumers: Figure 1 The “framework of interaction” adopted by the EMA management board in 2005 provides the formal basis for involving patients and consumers in Agency activities and relies on five critical elements: A network of European patients and consumers organisations A forum of exchange: EMA Working Party with Patients and Consumers’ organisations A pool of patients acting as experts in their disease and its management Interaction with the EU Regulatory Network Capacity-building focusing on training and raising awareness about EU regulatory system Today patients and consumers are systematically involved in a wide range of EMA activities: Members of EMA Management Board and scientific committees Members of the EMA ‘Patients and Consumers Working Party’ Scientific advice procedures during medicines development; Discussions on benefit/risk evaluations; Review of information (e.g. package leaflet, safety communication); Topic groups and workshops The Agency works with a large network of organisations and individuals; organisations can register with the Agency and if they meet certain eligibility criteria they are then listed on the EMA website (EMA website). Individuals are also encouraged to register to be included in the EMA “individual experts’ stakeholder database” (registration form); they then receive targeted information and can be contacted for involvement in EMA activities. Patients usually participate in person or via written procedure and are involved as either representatives of their organisation or as individual experts, depending on the nature of the activity. There are opportunities for involvement all along the medicine’s evaluation lifecycle: Figure 2 EMA continually looks to further enhance its methods for gathering patient knowledge and preferences at each stage of the process and is investigating the use of additional tools to complement those already in-house. Surveys are regularly used to elicit feedback from both regulators and patients/consumers on their involvement, its added value to the process and identify areas for potential improvement. There are inevitably challenges to overcome, for example finding suitable patients (e.g. language barrier, availability), ensuring tailored support to facilitate and enhance participation, providing a clear definition of the patient role, addressing issues around confidentiality and representation and also how to measure the impact/value of the input. Evidence, including testimonies and concrete examples, has demonstrated that ultimately patient/consumer input: Brings the everyday aspects of living with a disease into the scientific discussions; Improves the quality of patient information and communication on medicines; Increases the dissemination of EMA outcomes. Today patients and consumers are a valued and integral part of the work at the EMA and their perspectives are considered an essential element for increasing transparency in the regulatory process and ensuring more meaningful decisions for all concerned.
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Author of
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OA21 - Palliative and Supportive Care for Lung Cancer Patients (ID 405)
- Event: WCLC 2016
- Type: Oral Session
- Track: Palliative Care/Ethics
- Presentations: 1
- Moderators:C.A. Silva, H. Watzke
- Coordinates: 12/07/2016, 11:00 - 12:30, Schubert 5
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OA21.03 - Unmet Needs in Physical and Emotional Side Effects during Lung Cancer Treatment and Survivorship (ID 4380)
11:20 - 11:30 | Author(s): J.C. King
- Abstract
- Presentation
Background:
Previous research has shown that supportive care needs in lung cancer patients are high and that this population may have significantly more unmet care needs than other cancer patients. Our goals for this study were to determine the most prevalent and problematic side-effects of lung cancer and lung cancer treatment in our community and to understand where both patients and caregivers felt there were unmet needs.
Methods:
A Community Needs Assessment survey was distributed to lung cancer patients and caregivers electronically between 11/9/2015 and 2/8/2016. 820 people responded, including 471 patients/survivors and 349 caregivers, 181 of whom identified as the primary caregiver. The overall completion rate was 72.6%, similar for both groups. Respondents identified all side effects they or their loved one experienced during and after treatment, as well as 5+ years after diagnosis. They also indicated which of these side-effects were most problematic during those time periods. Respondents were also for demographic information and for open-ended responses about their unmet needs during care and follow-up.
Results:
Respondents indicated a high rate of side effects, with over 95% reporting at least one. Importantly, both patients and caregivers reported that physical side effects were significantly more problematic during treatment but that emotional side effects were more problematic after treatment and in the long-term. Patients rated anxiety, fatigue, and shortness of breath as the most problematic short and long-term post-treatment side effects, with 18-29% of patients indicating these items at a particular time period. During treatment, gastrointestinal issues including constipation (18%), diarrhea (17%), and nausea (14%) were also identified as highly problematic side effects by the patients. Caregivers reported similar effects but also rated pain as problematic across all time periods (15-24%) and identified loss of appetite (28%) and weight loss (25%) during treatment. When questioned about unmet needs during treatment and survivorship, respondents frequently commented that their treatment team focused on treatment and survival and not on managing side effects.
Conclusion:
Side effect management is a clear unmet need for lung cancer patients and to help support their caregivers. Our data show high levels of emotional and physical side effects and a perceived lack of support for proper management. Notably, emotional side effects are prevalent after treatment for lung cancer into long-term survivorship and are frequently cited as the most problematic issue for those no longer in active treatment.
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P3.05 - Poster Session with Presenters Present (ID 475)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Palliative Care/Ethics
- Presentations: 1
- Moderators:
- Coordinates: 12/07/2016, 14:30 - 15:45, Hall B (Poster Area)
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P3.05-017 - Survivor Guilt: The Secret Burden of Lung Cancer Survivorship (ID 5171)
14:30 - 14:30 | Author(s): J.C. King
- Abstract
Background:
The 5-year observed survival rate for a stage IV non-small cell lung cancer patient is less than five percent. Such a small survival rate begs the questions of how these survivors might feel. Many survivors feel a deep-seated sense of guilt; a phenomenon known as survivor guilt. The goal of the present study was to identify the prevalence of survivor guilt among lung cancer patients, while also pinpointing themes among those who are affected.
Methods:
A questionnaire containing a subset of the published IGQ-67 Interpersonal Guilt Questionnaire was completed via Survey Monkey by 108 respondents. Respondents were also given a definition of survivor guilt with an open-ended question on their feelings toward surviving lung cancer when others did not. Qualitative analysis was conducted on open-ended text responses for respondents with the most measured survivor guilt. After key qualitative themes were established from the initial survey, focus groups were held in survivors who experienced high and low levels of survivor guilt to further explore the themes.
Results:
This study indicates that a significant amount of survivor guilt is experienced among lung cancer survivors. 55% of respondents identified as having experienced survivor guilt, yet 63.9% of respondents scored above average on the IGQ-67 Survivor Guilt Scale. Qualitative analysis established five recurring themes among 25% of respondents with the highest measured survivor guilt. Targeted focus groups revealed further commonalities among those with high and low levels of measured survivor guilt.
Conclusion:
This study identifies the prevalence of survivor guilt in lung cancer survivors and shows survivor guilt as a major psychosocial challenge. Further research across all cancer types must be explored in order to develop effective coping mechanisms for sufferers. This study develops the basis for future research directions in creating tools to identify, assess and treat survivor guilt in survivors of all cancers.
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P3.07 - Poster Session with Presenters Present (ID 493)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Regional Aspects/Health Policy/Public Health
- Presentations: 1
- Moderators:
- Coordinates: 12/07/2016, 14:30 - 15:45, Hall B (Poster Area)
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P3.07-014 - Patient and Caregiver Experiences: Identifying Gaps in Access to High Quality Care for Lung Cancer Patients (ID 4381)
14:30 - 14:30 | Author(s): J.C. King
- Abstract
Background:
A growing number of clinical guidelines recommend expansion of multidisciplinary care to include supportive/palliative care and survivorship care for oncology patients. Health care delivery systems vary and lung cancer patients may not have the education/awareness or ability to access these recommended services. Our goal was to assess treatment and care planning from the patient and caregiver perspective and to determine whether lung cancer patients are receiving the recommended high-quality care.
Methods:
A Community Needs Assessment survey was distributed to lung cancer patients and caregivers electronically between 11/9/2015 and 2/8/2016. 820 people responded, including 471 patients/survivors and 349 caregivers, 181 of whom were the primary caregiver. The overall completion rate was 72.6%. The survey queried the composition of the patient’s care team, incorporation of values-based discussions in care planning, discussions and plans for palliative care and, where applicable, survivorship care. Demographic information was asked to identify whether patterns of care varied with geographical or socio-economic factors.
Results:
Patient and caregiver reported experiences revealed multiple gaps in the delivery of high-quality patient care. Less than half of patients reported having a conversation about their values and care goals with their treatment team before determining their treatment plan. Less than 30% of patients reported having a psychiatrist/psychologist, social worker, palliative care professional, or nurse navigator as part of their care team in any time period – treatment or survivorship. For palliative care, only 26.9% of active patients had discussed it and 20.13% reported receiving it, despite lung cancer data showing its potential survival benefit. Caregivers reported a higher percentage – roughly 50% reported both palliative care discussions and care receipt. However, for caregiver-reported data, the patients receiving care generally had more advanced cancer and had often not survived. Survivorship care planning was also seen at significantly lower levels than current recommendations. Of those who had completed treatment and survived more than 5 years past diagnosis, only 22% of patients and 15% of caregivers reported having a survivorship care plan.
Conclusion:
Despite recommendations and guidelines for incorporation of palliative care, survivorship care plans, values-based care planning and appropriate psycho-social support into lung cancer treatment, the majority of lung cancer patients and caregivers surveyed reported not receiving these services. Respondents were technology-enabled and generally health-literate indicating that these problems could be more widespread in rural, lower-socioeconomic areas where lung cancer is common. Addressing these problems in health care delivery could positively impact lung cancer patients and their families.
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PA04 - Focus on Advocacy and Communication: Joint IASLC/ Global Lung Cancer Coalition Session (GLCC) (ID 358)
- Event: WCLC 2016
- Type: Patient & Advocacy Session
- Track: Patient Support and Advocacy Groups
- Presentations: 1
- Moderators:A. McNamara, A. Šajnić
- Coordinates: 12/06/2016, 14:30 - 15:45, Schubert 6
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PA04.03 - Helpline: Adapting to Changing Needs and Evolving Science (ID 6752)
15:05 - 15:25 | Author(s): J.C. King
- Abstract
- Presentation
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Helpline: Adapting to changing needs and evolving science The Lung Cancer Alliance HelpLine launched over 21 years ago and until recently was the only lung cancer-specific toll-free line in the United States. The reasons people call—for information, understanding, referral, compassion and most of all, hope—remain the same over time. But to keep pace with dramatic advances in the ways lung cancer is detected, diagnosed and treated, the LCA HelpLine has adapted quickly to meet the changing needs of our community. For many survivors and their loved ones, understanding lung cancer and its treatment is a challenge. Those impacted by the disease tend to be older, poorer and less educated, groups which also prefer to get their initial cancer information from their treatment teams. With competing time demands, treatment teams may not have enough time to ensure information is understood or to be sensitive to providing it when the survivor can absorb, process and remember. Some are hesitant to admit they don’t understand all they have been told and are uncomfortable asking questions. Over the past 3.5 years, there have been nearly equal numbers of patients and caregivers calling the HelpLine. Roughly three-quarters of callers were women. In 2016, LCA began tracking more call statistics. Of those who told us the type of lung cancer, we see 83% NSLCC and 17% SCLC – quite representative of the lung cancer population. More than half (53%) were already in treatment. As the science has evolved and practice-changing discoveries are made, professional HelpLine staff provide up-to-date information, support and referrals to those in our community, no matter their place in the journey. The HelpLine provides the opportunity for in-depth conversations, problem solving and the development of questions to ask the team—it serves not as a substitute for conversations with treatment team but as support and complement to them. The LCA HelpLine also has grown with the internet. For some, the internet is a wealth of knowledge, psychosocial support and information. But sometimes even savvy users need help interpreting the information they have found. For others, the internet is a scary and overwhelming place, full of difficult statistics, conflicting recommendations and hard to understand concepts. Additionally, many in our community do not have access to the internet at all or lack broadband speeds that make it an effective tool. While the internet can be helpful, it does not take the place of contact with another caring person who can help. The HelpLine also gives us daily contact with lung cancer community and allows us to keep abreast of what lung cancer patients, their loved ones and those at risk need most. And as we listen, we adapt our services and programs to their needs. For example, we have recently started offering a new webinar series on the top symptoms and side effects reported by those in treatment and long-term survivors. Recently, the pace of scientific discovery and drug development in lung cancer has been accelerating rapidly. With six new drugs approved by the Food and Drug Administration in 2015 and countless new clinical trials launching to test not only new drugs but novel combinations of different classes of agents, patients and caregivers can be even more confused about the best treatment options for them. To address this changing environment, we have recently launched the LungMatch program to help patients find and understand personalized treatment options that they can discuss with their treatment team. LungMatch includes referrals to a concierge service for molecular testing if patients have not had it, a new, user-friendly online matching platform, and in-house personalized clinical trial navigation for interested callers on the HelpLine. The program is still in its infancy, but in the first month of tracking, we determined that 85% of callers asked had never been on clinical trials and only 50% reported molecular testing of the lung cancer. These early statistics indicate the widespread need in the lung cancer community. Through adapting to the changing needs of our community and helping them understand the evolving science, the HelpLine has been a lifeline for the lung cancer community in the United States for over 21 years.
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