Background: European patients with chronic rhinosinusitis with nasal polyps (CRSwNP) have had only limited occasions to unite to have their voices heard, hence missing the opportunity to contribute to the improvement of CRSwNP care.Aims: To identify unmet needs in CRSwNP from the perspective of CRSwNP patients from the Patient Advisory Board (PAB) of the European Forum for Research and Education in Allergy and Airways diseases (EUFOREA).Methodology: Semi-structured interviews were conducted individually with 15 European patients with CRSwNP and with a disease history of more than 2 years. Patients shared their burden of the disease and frustrations related to CRSwNP care, experiences with key pillars of current treatment options, shortcomings of the current care pathways and recommendations for improvement of care. A panel of 30 members of the Patient Advisory Board reviewed the interview report and provided further input during 2 virtual meetings.Results: CRSwNP patients indicated the need for greater awareness from society and physicians of the disease burden with impact on social function and well-being. Along with a loss of ability to smell and the continuous presence of secretions in the nose, most patients reported poor sleep quality and psychological impact as the most bothersome symptoms. Patients' frustrations relate primarily to the underestimation of the disease burden, the lack of coordination of care and the limited treatment options available to them. Treatment options with oral corticosteroids and/or sinus surgery both have positive and negative aspects, including the lack of long-lasting efficacy. Better coordination of care, more patient-centered care, greater public awareness, increases in research on the disease mechanisms and better therapeutic options would be warmly welcomed by CRSwNP patients.Conclusions: This statement of the EUFOREA Patient Advisory Board on CRSwNP provides novel insights on the underestimation of the burden of CRSwNP and shortcomings of current care. Multiple recommendations made by the patients can underpin action plans for implementation of better care for CRSwNP among all physicians treating patients with this disabling disease.

BackgroundType 2 inflammation underlies the chronicity of disease in subgroups of patients with asthma, chronic rhinosinusitis with nasal polyps (CRSwNP) and atopic dermatitis (AD), that often co-exist. Although several studies have investigated the unmet needs of asthma, AD and CRSwNP as such, little is known about the similarities and differences in experiences and perspectives of the current management of patients with comorbid Type 2 inflammatory diseases.AimsTo improve insight into the common and organ-specific needs of patients with Type 2 inflammation and comorbidities, allowing the formulation of recommendations to better address these needs in the future.MethodologyThis qualitative study was conducted between July 2021 and December 2021 using semi-structured face-to-face or telephone interviews with patients suffering from year-long severe chronic Type 2 inflammation and at least one co-morbid inflammatory condition. Seven participating academic centers in Europe interviewed asthma (Copenhagen and Leuven), CRSwNP (London, Amsterdam and Crete) and/or AD (Oldenburg and Zurich) patients on patient characteristics, disease severity, shortcomings of current care pathways and suggestions for improvement of care. Transcripts were analyzed using an inductive thematic analysis approach.ResultsEighty-one patients with severe Type 2 inflammation and comorbidities were interviewed. Similar needs were recognized by patients with Type 2 inflammation, with both a lack of coordination in care and a lack of a real cure reported as being most frustrating. However, several needs are specific to asthma, CRSwNP and AD. Suggestions for improvement of care were generic across diseases, such as the implementation of a multidisciplinary approach, the improved facilitation of access to better treatments, the increase of general awareness on disease burden, and better educational programs for healthcare providers and patients. Of note, patients with CRSwNP also stated the need for alternatives to sinus surgery, whereas patients with asthma requested better medical care to prevent exacerbations and patients with AD would warmly welcome the reimbursement of emollients.ConclusionPatients with asthma, CRSwNP and AD have shared unmet needs that need to be addressed by physicians, the academic community and health policy makers. This survey provides unique recommendations made by patients for the implementation of better care.

South Africa (SA) has a rich history in solid organ transplantation, with the first heart transplant performed at Groote Schuur Hospital, Cape Town, in 1967. [1] Organ donation is a prerequisite for transplantation, and it is therefore concerning that the number of organ donors in the Western Cape Province and nationally has decreased over the last decade. [2] Prompt identification and referral of potential brain stem dead donors in the intensive care units (ICUs) and emergency departments is of utmost importance, according to international studies. [3-5] The consent rate among families of potential donors in SA decreased from 55% in 1991 to 50% in 2001, and to 32% in 2011. [6,7] SA has a very low donor rate of 1.7 per million population, [2] in comparison with Spain, the world leader in organ donation, with a 40 per million population rate. [8] Spain is an international leader in the management of deceased organ donation, and by 2015 the country had trained 16 000 healthcare professionals regarding organ donation. [8] This illustrates that training and increased knowledge play a role in the early identification and referral of potential organ donors. In SA, there are currently 22 procuring organ transplant coordinators (OTCs), [9] which is clearly inadequate for a population of 57.73 million. [10] The three OTCs (specifically responsible for organ procurement) for private hospitals in Cape Town visit 32 private hospitals from all the hospital groups in the Cape Peninsula and surrounding area on a monthly

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White paper on European patient needs and suggestions on chronic type 2 inflammation of airways and skin by EUFOREA.