The patient journey and burden of disease in Demodex blepharitis in the United States

Demodex blepharitis (DB) is a chronic eyelid disease caused by an infestation of Demodex mites. The objective of this chart audit study was to characterize the patient journey and burden of illness associated with DB from an eye-care provider’s perspective. Retrospective medical data for patients with a confirmed diagnosis of DB were anonymously collected via ophthalmologists and optometrists in the US (collectively eye-care providers [ECPs]), in June-July 2022. Each eligible ECP completed a questionnaire and provided chart abstractions of 1–5 medical charts of patients with DB in an electronic case report form. All ECPs (N = 61) were ophthalmologists or optometrists who worked primarily in office-based private practices (97%). Data from 192 medical charts of patients with an ECP-confirmed diagnosis of DB were abstracted and their demographics included 54% males and 71% Caucasians. The mean time (±SD) since diagnosis was 11 (±9.0) years. Over 40% of patients were not examined for DB at initial presentation, and the average time from initial presentation to a definitive diagnosis for DB was 6.5 months. After DB diagnosis and across the period of observation until the time of the study, patients had a mean (±SD) of 3.2 (±2.8) follow-up visits due to DB and continued to use multiple off-label prescription and over-the-counter therapies for symptom management. Medical records may be incomplete or inconsistently reported and subject to recall bias. The patient journey is lengthy with multiple challenges, including delay in DB diagnosis and recurring DB symptoms, underlining an urgent need for action to improve diagnosis and treatment of DB. Demodex blepharitis, caused by Demodex mite infestation, is a prevalent chronic disease of the eyelid. This study examined the patient experiences and the burden of the disease from the eye-care providers’ perspectives. Many patients experienced delays in diagnosis, with over 40% were not examined for Demodex blepharitis initially. On average, diagnosis took 6.5 months from the initial presentation. Patients required multiple follow-up visits (average 3.2) and used various management therapies after diagnosis. The results underscore the impact of Demodex blepharitis and emphasize the importance of early detection and improved treatment strategies to better patient experiences and outcomes.

蠕形螨睑缘炎（Demodex blepharitis, DB）是一种由蠕形螨感染引发的慢性眼睑疾病。本项病历核查回顾性研究旨在从眼保健服务提供者的视角，明确与DB相关的患者就医历程及疾病负担。2022年6月至7月，美国的眼科医师与验光师（统称为眼保健服务提供者[ECPs]）匿名收集了经确诊DB患者的回顾性医疗数据。每位符合入组标准的ECP均完成了一份调查问卷，并通过电子病例报告表（electronic case report form）提取1至5例DB患者的病历信息。本次研究共纳入61名ECP，其中97%主要在私立诊所执业，且均为眼科医师或验光师。研究共提取192份经ECP确诊的DB患者病历，患者人口学特征显示男性占比54%，高加索人种占比71%。自确诊以来的平均时长（±标准差）为11.0±9.0年。超过40%的患者在首次就诊时未接受DB相关检查，从首次就诊到明确诊断DB的平均时长为6.5个月。在确诊DB后至本研究开展期间，患者因DB平均需进行3.2±2.8次随访就诊，且持续使用多种超说明书处方药（off-label prescription）及非处方治疗药物（over-the-counter therapies）以控制症状。病历信息可能存在不全或记录不一致的情况，且易受回忆偏倚（recall bias）影响。患者的就医历程漫长且面临多重挑战，包括DB诊断延迟及症状反复发作，这凸显出亟需采取措施以改善DB的诊断与治疗。蠕形螨睑缘炎由蠕形螨感染引发，是一种常见的慢性眼睑疾病。本研究从眼保健服务提供者的视角，探讨了患者的患病体验及疾病负担。众多患者均经历了诊断延迟，超过40%的患者在首次就诊时未接受蠕形螨睑缘炎相关检查。从首次就诊到明确诊断的平均时长为6.5个月。患者在确诊后需多次随访就诊（平均3.2次），并使用多种治疗手段控制病情。研究结果凸显了蠕形螨睑缘炎的疾病影响，并强调了早期诊断及优化治疗策略对于改善患者就医体验与预后结局的重要性。