解决2型炎症性疾病患者未满足的需求:当生活质量可以产生影响时

IF 3.3 Q2 ALLERGY Frontiers in allergy Pub Date : 2023-11-09 DOI:10.3389/falgy.2023.1296894
Enrique Gómez de la Fuente, Isam Alobid, Iñigo Ojanguren, Victoria Rodríguez-Vázquez, Beatriz Pais, Víctor Reyes, Miriam Espinosa, África Luca de Tena, Irantzu Muerza, Eduard Vidal-Barraquer
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However, limited data on patients’ experiences, perspectives, and current management of T2i diseases have been published thus far. Aims This survey, promoted by the patient-driven T2i Network Project, aimed at identifying the common drivers and challenges related to the QoL of patients with T2i diseases by putting the patient's perspective at the force and including it in the design of new care strategies. Methodology An anonymous online survey was carried out through convenience sampling between May and June 2023. The survey was codesigned by members of different patient associations, healthcare professionals and healthcare quality experts, and implemented using EUSurvey and distributed through eight patient associations from Spain. The survey consisted of 29 questions related to the participant's sociodemographic features, a series of self-reported multiple choice or rating scale questions, including diagnosis, QoL measures, disease severity, healthcare resource utilization, and quality of care. Results The survey included 404 participants, members from eight patient associations, the majority of whom had moderate-to-severe self-reported disease severity (93%) and one or more coexisting pathologies related to T2i (59%). Patients with more than one pathology had a significantly greater impact on QoL than those with only one pathology ( p < .001). Participants with self-reported severe symptoms reported significantly worse QoL than those with mild-to-moderate severity ( p < .001). More than half of the patients (56%) felt constantly bothered by the unpredictability of their illness caused by potential exposure to known or unknown disease triggers. 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引用次数: 0

摘要

哮喘(AS)、特应性皮炎(AD)、变应性鼻炎(AR)、嗜酸性粒细胞性食管炎(EoE)、慢性鼻窦炎伴鼻息肉(CRSwNP)、慢性荨麻疹(CU)、非甾体抗炎药加重呼吸系统疾病(N-ERD)和某些表型的慢性阻塞性肺疾病(COPD)等患者具有共同的潜在发病机制,即2型炎症(T2i)。这些疾病通常与其他T2i疾病共存,并对患者的生活质量(QoL)产生重大影响。然而,到目前为止,关于T2i疾病的患者经验、观点和当前管理的数据有限。该调查由患者驱动的T2i网络项目推动,旨在通过将患者的观点纳入力量并将其纳入新的护理策略设计中,确定与T2i疾病患者生活质量相关的共同驱动因素和挑战。方法于2023年5月至6月进行匿名在线调查。该调查由不同患者协会的成员、医疗保健专业人员和医疗保健质量专家共同设计,并使用e篡位调查实施,并通过西班牙的八个患者协会分发。该调查包括29个与参与者的社会人口学特征相关的问题,一系列自我报告的选择题或评定量表问题,包括诊断、生活质量测量、疾病严重程度、医疗资源利用和护理质量。该调查包括404名参与者,来自8个患者协会的成员,其中大多数人自述有中度至重度疾病严重程度(93%)和一种或多种与T2i相关的并存病理(59%)。有一种以上病理的患者对生活质量的影响明显大于只有一种病理的患者(p <措施)。自我报告严重症状的参与者报告的生活质量显著低于轻度至中度严重症状的参与者(p <措施)。超过一半的患者(56%)因潜在暴露于已知或未知的疾病触发因素而对疾病的不可预测性感到不断困扰。专家和初级保健之间缺乏协调也被参与者表达为一个不满意的领域,52%的人表示完全缺乏协调,21%的人表示平均协调。本文报告了一项患者主导的倡议的初步发现,强调了2型炎症相关疾病患者面临的常见生活质量挑战,并强调了进一步临床研究以改善该患者群体管理的重要性。考虑到对生活质量的重大影响,将多学科方法集成到新的医疗保健协议中有可能改善患者管理和生活质量,缩短诊断时间并减少医疗保健资源的利用。
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Addressing the unmet needs in patients with type 2 inflammatory diseases: when quality of life can make a difference
Background Patients with asthma (AS), atopic dermatitis (AD), allergic rhinitis (AR), eosinophilic esophagitis (EoE), chronic rhinosinusitis with nasal polyps (CRSwNP), chronic urticaria (CU), non-steroidal anti-inflammatory drugs-exacerbated respiratory disease (N-ERD), and certain phenotypes of chronic obstructive pulmonary disease (COPD), among others, have a common underlying pathogenesis known as Type 2 inflammation (T2i). These diseases often coexist with other T2i conditions and have a substantial impact on the quality of life (QoL) of patients. However, limited data on patients’ experiences, perspectives, and current management of T2i diseases have been published thus far. Aims This survey, promoted by the patient-driven T2i Network Project, aimed at identifying the common drivers and challenges related to the QoL of patients with T2i diseases by putting the patient's perspective at the force and including it in the design of new care strategies. Methodology An anonymous online survey was carried out through convenience sampling between May and June 2023. The survey was codesigned by members of different patient associations, healthcare professionals and healthcare quality experts, and implemented using EUSurvey and distributed through eight patient associations from Spain. The survey consisted of 29 questions related to the participant's sociodemographic features, a series of self-reported multiple choice or rating scale questions, including diagnosis, QoL measures, disease severity, healthcare resource utilization, and quality of care. Results The survey included 404 participants, members from eight patient associations, the majority of whom had moderate-to-severe self-reported disease severity (93%) and one or more coexisting pathologies related to T2i (59%). Patients with more than one pathology had a significantly greater impact on QoL than those with only one pathology ( p &lt; .001). Participants with self-reported severe symptoms reported significantly worse QoL than those with mild-to-moderate severity ( p &lt; .001). More than half of the patients (56%) felt constantly bothered by the unpredictability of their illness caused by potential exposure to known or unknown disease triggers. The lack of coordination between specialists and primary care was also expressed as an area of dissatisfaction by participants, with 52% indicating a complete lack of coordination and 21% indicating an average coordination. Conclusion This article reports the initial findings of a patient-led initiative, which highlights the common QoL challenges faced by individuals with type 2 inflammation-related diseases and emphasizes the importance of further clinical research to improve the management of this patient group. Considering the significant impact on QoL, a multidisciplinary approach integrated into new healthcare protocols has the potential to improve patient management and QoL, shorten the time to diagnosis and reduce healthcare resource utilization.
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12 weeks
期刊最新文献
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