Patients Unmet Needs in Chronic Rhinosinusitis With Nasal Polyps Care: A Patient Advisory Board Statement of EUFOREA

Claeys, N.; Teeling, Mary; Legrand, P.; Poppe, Matthew M.; Verschueren, Patrick; Prins, L. De; Cools, Leen; Cypers, L.; Fokkens, Wytske J.; Hopkins, Claire; Hellings, Peter

doi:10.3389/falgy.2021.761388

Cited by 21 publications

(29 citation statements)

References 29 publications

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“…Participants agreed on the lack of coordination amongst health care contacts, supporting the results of our previous Unmet Needs in CRSwNP initiative by the EUFOREA Patient Advisory Board ( 17 ). Disagreements between physicians, health care inequalities, lack of follow-up, overlooking of comorbidities with focus on one organ, and long waiting lists on the clinics covering the co-morbidities, raised questions about the efficiency and organization of current health care services in different European countries.…”

Section: Discussionsupporting

confidence: 69%

“…Clear guidelines on the management of asthma, CRSwNP and atopic dermatitis exist but data have shown that few patients are being treated in line with these guidelines ( 28 , 31 ). EUFOREA aims to bridge this gap between guidelines and daily practice ( 17 ). Physicians are required to receive continuous and high-quality education with the aim of having adequate knowledge of the novel treatment options and optimizing timely diagnosis and referral ( 30 ).…”

Section: Discussionmentioning

confidence: 99%

“…EUFOREA is an international non-profit organization aiming to help healthcare providers implement optimal care for patients suffering from chronic respiratory diseases ( 20 , 21 ). In that context, EUFOREA has recently published a paper to address the unmet needs of European patients with CRSwNP, including the benefits and shortcomings of care focused on the upper airways ( 17 ). The Patient Advisory Board of EUFOREA aimed to expand the previous CRSwNP initiative on unmet needs in CRSwNP and include the view of patients with asthma and AD, providing a better overview of shortcomings of care in those patients who often present with comorbidities resulting in this White Paper.…”

Section: Introductionmentioning

confidence: 99%

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White Paper on European Patient Needs and Suggestions on Chronic Type 2 Inflammation of Airways and Skin by EUFOREA

Prins

Raap²,

Mueller³

et al. 2022

Front. Allergy

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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.

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Section: Discussionsupporting

confidence: 69%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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White Paper on European Patient Needs and Suggestions on Chronic Type 2 Inflammation of Airways and Skin by EUFOREA

Prins

Raap²,

Mueller³

et al. 2022

Front. Allergy

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“…For patients with more severe asthma, it has been shown that CRSwNP is more difficult to manage, and that the condition increased the probability of a recurring ESS 30 . However, ESS in CRSwNP patients is associated with a high rate of recurrence which is likely to contribute to the burden of the disease, further exacerbated by comorbidities such as asthma 35,38 …”

Section: Discussionmentioning

confidence: 99%

The burden of chronic rhinosinusitis with nasal polyps and its relation to asthma in Finland

Toppila‐Salmi

Hällfors²,

Aakko³

et al. 2022

Clinical & Translational All

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Background Chronic rhinosinusitis with nasal polyps (CRSwNP) is commonly associated with asthma. Treatment of CRSwNP includes intranasal and systemic corticosteroids, with non‐responsive patients commonly considered for endoscopic sinus surgery (ESS). This nationwide register‐based study evaluated the incidence, prevalence, and treatment burden of CRSwNP in Finland, and their association with the presence and severity of comorbid asthma. Methods Electronic health records of patients diagnosed with CRSwNP between 1.1.2012 and 31.12.2018 in Finnish specialty and primary care were included in the study. The patients were divided into subgroups based on presence, severity, and control of asthma: no asthma, mild to moderate asthma, severe controlled asthma, and severe uncontrolled asthma. A mean cumulative count of ESS was calculated over time per subgroup. Results The prevalence of CRSwNP increased from 602.2 to 856.7 patients per 100,000 population between years 2012 and 2019 (p < 0.001). A total of 18,563 patients (59.9% male) had incident CRSwNP between 2012 and 2019, with 27% having asthma, 6% having severe asthma, and 1.5% having severe uncontrolled asthma. In the no asthma, severe controlled asthma, and severe uncontrolled asthma subgroups, systemic corticosteroids were used by 54.1%, 94.9% and 99.3% (p < 0.001), respectively, while the ESS count 3 years post diagnosis was 0.49, 0.68 and 0.80, respectively. Conclusions The prevalence of CRSwNP showed a significant increase in the recent decade in Finland. Comorbid asthma, and in particular severe asthma, increased the probability of receiving systemic corticosteroids and undergoing ESS. Thus, improved management of CRSwNP in patients with comorbid asthma is urgently needed.

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“…33 Although sinus surgery is an important treatment option for patients with CRSwNP, undergoing repeat surgeries with occasionally only temporary or unpredictable outcomes and potentially long recovery times Fokkens et al is a concern for patients. 35 Repeat surgeries are also associated with increased overall clinical burden (including healthcare resource utilisation and costs). 36 It was therefore important to perform a further in-depth assessment of the effect of mepolizumab on sinus surgery endpoints.…”

Section: Discussionmentioning

confidence: 99%

Mepolizumab for chronic rhinosinusitis with nasal polyps (SYNAPSE): In‐depth sinus surgery analysis

Fokkens

Mullol

Kennedy

et al. 2022

Allergy

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BackgroundPatients with severe chronic rhinosinusitis with nasal polyps (CRSwNP) often require repeat sinus surgery. Mepolizumab reduced the need for sinus surgery in the SYNAPSE trial; this analysis sought to provide a more in-depth assessment of surgery endpoints in SYNAPSE. MethodsSYNAPSE was a double-blind Phase III trial (NCT03085797) in adults with recurrent, refractory, severe, CRSwNP eligible for repeat sinus surgery despite standard of care treatments and previous surgery. Patients were randomized (1:1) to mepolizumab 100 mg subcutaneously or placebo, plus standard of care, every 4 weeks for 52 weeks. Time to first inclusion on a waiting list for sinus surgery and time to first actual sinus surgery (both up to Week 52) were assessed; the latter endpoint was also analysed post hoc according to time since last sinus surgery before study screening and baseline blood eosinophil count. ResultsAmong 407 patients (mepolizumab: 206; placebo: 201), mepolizumab versus placebo reduced the risk of being included on a waiting list for sinus surgery (Week 52 Kaplan-Meier probability estimate [95% confidence interval]: 13.9% [9.8%, 19.5%] vs 28.5% [22.7%, 35.4%]). Mepolizumab versus placebo reduced the risk of sinus surgery irrespective of time (<3 vs ≥3 years) since patients' last sinus surgery prior to study screening (hazard ratios [95% confidence intervals] 0.28 [0.09, 0.84] and 0.50 [0.26, 0.98], respectively) and baseline blood eosinophil count. ConclusionsMepolizumab reduced the risk of further sinus surgery in patients with recurrent, refractory, severe CRSwNP, irrespective of the patient baseline characteristics assessed.

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Patients Unmet Needs in Chronic Rhinosinusitis With Nasal Polyps Care: A Patient Advisory Board Statement of EUFOREA

Cited by 21 publications

References 29 publications

White Paper on European Patient Needs and Suggestions on Chronic Type 2 Inflammation of Airways and Skin by EUFOREA

White Paper on European Patient Needs and Suggestions on Chronic Type 2 Inflammation of Airways and Skin by EUFOREA

The burden of chronic rhinosinusitis with nasal polyps and its relation to asthma in Finland

Mepolizumab for chronic rhinosinusitis with nasal polyps (SYNAPSE): In‐depth sinus surgery analysis

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