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P. Muszumanski
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 - 12:30 | 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)
11:00 - 12:30 | 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)
11:00 - 12:30 | 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)
11:00 - 12:30 | 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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