Patients with chronic rhinosinusitis (CRS) with nasal polyps identified several unmet needs regarding their condition, particularly a lack of public and physician awareness on disease burden and poor sleep quality.
Several unmet needs persist for patients with chronic rhinosinusitis with nasal polyps (CRSwNP), including an underestimation of disease burden and limited treatment options, according to study findings published in Frontiers in Allergy.
In contrast with asthma, respiratory allergies, and atopic dermatitis, researchers note that few international patient initiatives have explored the burden of disease and other relevant factors of CRSwNP.
The chronic inflammatory condition has been known to cause a significant impact on well-being and social function, in which a substantial group of patients remain uncontrolled with recurrent needs of oral corticosteroids and/or endoscopic sinus surgery.
“Existing literature has found the impact of CRSwNP on quality of life (QOL) to be comparable with other chronic diseases such as chronic obstructive pulmonary disease (COPD), congestive heart failure, and diabetes,” said the study authors. “The significant economic and clinical burden of CRSwNP highlights the need for better treatment options and reorganization of the current care pathways.”
In seeking to highlight the patient view and impact of CRSwNP and other airway diseases, the European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA) Patient Advisory Board (PAB) was launched in 2017.
“Patients of the PAB are regularly asked by the EUFOREA board and expert team leaders to share patient views on the burden of disease and care pathways, to advise experts on novel guidelines for respiratory care, and to help define strategies for better care,” they noted.
Researchers conducted individual semi-structured interviews in March 2021 with 15 European patients with CRSwNP of the PAB (mean age, 52 years; 53% male) to gauge unmet needs in this patient population. These patients reported a disease history of more than 2 years and rated the severity of their CRS at an average of 6 out of 10.
Participants 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 PAB then reviewed the interview report and provided further input during 2 virtual meetings.
In their responses, patients with CRSwNP highlighted the need for greater awareness from society and physicians regarding the impact their disease burden has on social function and well-being. Olfactory dysfunction and the continuous presence of secretions in the nose were noted as the most bothersome symptoms of CRSwNP, followed by poor sleep quality and psychological impact.
Frustrations related to CRSwNP care among patients related primarily to the underestimation of the disease burden, the lack of coordination of care, and the limited treatment options available. Current standard of care options of oral corticosteroids and/or endoscopic sinus surgery were noted to have both positive and negative aspects, including the lack of long-lasting efficacy.
Several management considerations overall were identified:
“This statement of the EUFOREA PAB on CRSwNP provides novel insights on the underestimation of the burden of CRSwNP and shortcomings of current care,” concluded the study authors. “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.”
Claeys N, Teeling MT, Legrand P, et al. Patients unmet needs in chronic rhinosinusitis with nasal polyps care: a patient advisory board statement of EUFOREA. 2021;2:761388. doi:10.3389/falgy.2021.761388