Nasal polyp syndrome: a patient-centred term for CRSwNP by EUFOREA.

Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) is a chronic inflammatory disease of the nose and paranasal sinus cavities that significantly affects well-being and social function, particularly in young adults and middle-aged populations. CRSwNP is a common health condition in the Western world, with an estimated prevalence of 3%. Despite worldwide evidence-based treatment guidelines such as the European Position Paper on Rhinosinusitis and Nasal Polyps (EPOS) 2020 and the European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA) chronic rhinosinusitis (CRS) pocket guide, a significant number of patients remain undiagnosed and/or uncontrolled with repeated oral corticosteroids (OCS) treatments and/or (multiple) endoscopic sinus surgeries (ESS).

[Participation in primary care research - From the idea to the constitution of a citizens advisory board]. / Partizipation in der allgemeinmedizinischen Forschung ­ Von der Idee bis zur Gründung eines Bürger*innenbeirats.

INTRODUCTION: Public participation in research processes is becoming increasingly important and is justified with positive effects for research. The first successful initiatives can also be found in general practice and health services research. The transparent presentation of these projects is essential to the discussion about participation. The aim of this article is to present and discuss the conception and implementation of the initiative at the Institute of General Practice and Health Services Research at the Technical University of Munich and the kick-off event for the participation of patients, citizens and patient representatives. METHODS: This article reports the planning, recruitment, implementation, and evaluation of the kick-off event. Frameworks for future events are described. RESULTS: In total, twelve persons were recruited through various recruitment channels to participate in the kick-off event. The participants showed a diverse structure of motives with regard to participation in research. All participants shared the essential goal of improving research and care by adding their perspectives to research processes. However, the specific opportunities for participation and the role of patients and citizens in research processes were unclear. During the event, future workshops were planned to address these challenges. The focus was on strengthening relationships and communicating the basics of primary care research in order to enable sustainable participation. DISCUSSION: The participants' different motivations resulted in the need to explore the concrete possibilities of participation. One of the specific requirements was to focus on role identification and the structure of the initiative. The question of self-description and -identification as a patient and/or citizen seemed crucial. Furthermore, a concise introduction to the topic of participation in research processes, as well as patient and citizen qualifications, is considered necessary. CONCLUSION: Establishing an advisory board for patients and citizens in primary care research is associated with specific requirements. In addition to fundamental necessities such as the joint clarification of the possibilities of participation, defining the role and establishing the identity of the initiative should be promoted.

Adherence to inhaled antibiotics in people with cystic fibrosis: insights from a virtual patient advisory board.

BACKGROUND: Chronic airway infection by Pseudomonas aeruginosa significantly impacts the health of people with cystic fibrosis (PwCF), presenting complex treatment challenges. RESEARCH DESIGN AND METHODS: To gain insights into PwCF's experiences, a virtual European Patient Advisory Board was convened. Board explored inhaled antibiotic usage, treatment adherence, and associated challenges. Additionally, an online survey was conducted among PwCF to further understand real-life experiences and unmet needs, particularly related to CFTR modulators. RESULTS: The Advisory Board proved instrumental in collecting valuable real-world perspectives, offering potential avenues for reshaping the care model for complex diseases like cystic fibrosis. CONCLUSIONS: PwCF on CFTR modulators are questioning the necessity of continuing chronic medications and therapies. Physicians are urged to carefully consider the balance between simplifying antibiotic treatment and the risk of clinical deterioration due to bacterial infections when making treatment decisions. Furthermore, the development and global harmonization of diagnostic tools for chronic lung damage and treatment guidelines are crucial to justify the demanding routines that PwCF must endure to manage their condition.The heterogeneity in patient journeys, diagnostic challenges, treatment complexity, and issues related to adherence highlight the need for patient-centric, personalized care that emphasizes improving and maintaining treatment adherence to optimize cystic fibrosis management.

EUFOREA summit in Brussels 2023: inspiring the future of allergy & respiratory care.

In March 2023, the European Forum for Research and Education in Allergy and Airways diseases (EUFOREA) organized its bi-annual Summit in Brussels with expert panel members of EUFOREA, representatives of the EUFOREA patient advisory board, and the EUFOREA board and management teams. Its aim was to define the research, educational and advocacy initiatives to be developed by EUFOREA over the next 2 years until the 10th anniversary in 2025. EUFOREA is an international non-for-profit organization forming an alliance of all stakeholders dedicated to reducing the prevalence and burden of chronic allergic and respiratory diseases via research, education, and advocacy. Based on its medical scientific core competency, EUFOREA offers an evidence-supported platform to introduce innovation and education in healthcare leading to optimal patient care, bridging the gap between latest scientific evidence and daily practice. Aligned with the mission of improving health care, the expert panels of asthma, allergic rhinitis (AR), chronic rhinosinusitis (CRS) & European Position Paper on Rhinosinusitis and Nasal Polyps (EPOS), allergen immunotherapy (AIT) and paediatrics have proposed and elaborated a variety of activities that correspond to major unmet needs in the allergy and respiratory field. The current report provides a concise overview of the achievements, ambitions, and action plan of EUFOREA for the future, allowing all stakeholders in the allergy and respiratory field to be up-dated and inspired to join forces in Europe and beyond.

[Older patients' involvement in research (INVOLVE-Clin): a study protocol]. / Aktive Beteiligung von älteren Patient*innen an klinischer Forschung (INVOLVE-Clin): Ein Studienprotokoll.

INTRODUCTION: Patient involvement in health research is an integral part of health care in many countries. It promotes the relevance and quality of research and increases the meaningfulness of research results. Meanwhile, the value of patient involvement has also been recognised in Germany. The lack of a common understanding of patient involvement and appropriate methods make implementation difficult. In Germany, patients are still rarely involved in the planning and conduct of health research. Vulnerable patient groups such as the elderly and the very old are considered particularly challenging for researchers in active patient involvement due to their special needs, which is why they are often neglected. Especially nursing home residents suffer from a variety of health impairments which are accompanied by a high number of prescription drugs and adverse events and can therefore make patient involvement more difficult. The present project aims to test the method of patient advisory boards for the involvement of nursing home residents. Using the design of a clinical trial to optimise medication for nursing home residents as a case study, we will assess the feasibility of the method for this target group. We will also install a patient advocate as moderator of the advisory board. The study plan is described in the present study protocol. METHODS: Two patient advisory boards with nursing home residents will be established. With a patient advocate acting as moderator, the essential elements of a clinical trial to optimise medication will be discussed and passed on to the study planning team via the patient advocate. The overall topic of the clinical trial is the optimisation of medication in cardiovascular disease. The nursing home residents are informed about the contents and ideas of the study to be planned and the interests of the researchers, respectively, and will discuss the proposals of the study planning team. Nursing home residents', the patient advocate's and the researchers' expectations and experiences will be examined in individual interviews. DISCUSSION: The study will provide a potentially suitable method to involve nursing home residents in the research process. The jointly developed study design will be incorporated into a new project proposal. The results will be used to inform the development of a German handbook on active public and patient involvement.