管理式医疗机构中患者对偶发性系统性肥大细胞增多症负担的报告。

IF 8.2 1区医学 Q1 ALLERGY Journal of Allergy and Clinical Immunology-In Practice Pub Date : 2024-10-28 DOI:10.1016/j.jaip.2024.10.021

Robert S Zeiger, Kevin Y Tse, Qiaowu Li, Mary Saparudin, Sahar S Al-Salman, Eric J Puttock, Kerri Miller, Dakota Powell, Benjamin Lampson, Erin Sullivan, Wansu Chen

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引用次数: 0

摘要

背景：需要更好地了解偶发性系统性肥大细胞增多症（ISM）这一最常见的肥大细胞增多症亚型：目的：更好地了解ISM的诊断过程、症状严重程度、对生活质量和工作/活动的影响以及医疗保健利用情况：收集了 40 名符合 2016 年世界卫生组织标准的有记录的 ISM 成人的调查数据，包括经过验证的问卷[ISM 症状评估表（ISM-SAF©）、简表生活质量调查（SF-12v1）]。斯皮尔曼相关系数确定了ISM-SAF©症状总分（TSS）与SF-12v1得分之间的关联。使用 Kruskal-Wallis 和 Fisher's 精确检验比较了中度/重度与轻度 TSS 评分的 ISM 负担：患者年龄为 56.0±13.0 岁，65.0% 为女性，62.5% 为白人，22.5% 为西班牙裔患者。40%的患者确诊ISM需要2年以上的时间，47.5%的患者需要≥6次就诊，50%的患者被认为中度/极度困难。近一半的患者每天都会出现症状，而且自诊断以来症状的严重程度有所加重/明显加重。总体 TSS 为 27.4±16.2（平均值±SD）。SF-12 身体成分摘要（PCS）（46.7±11.4）分和精神成分摘要（MCS）（47.6±10.2）分均低于普通人群的 50 分。中度相关性（PC结论：半数患者自述 ISM 是一种严重影响日常生活的负担。

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Patient Reported Burden of Indolent Systemic Mastocytosis in a Managed Care Organization.

Background: Indolent systemic mastocytosis (ISM), the most frequent subtype of SM, requires better understanding.

Objective: To better understand the diagnostic journey, symptom severity, impact on quality of life and work/activities, and healthcare utilization of ISM.

Methods: Survey data were collected from 40 adults with documented ISM meeting WHO 2016 criteria, including validated questionnaires [ISM Symptom Assessment Form (ISM-SAF©), Short Form Quality of Life Survey (SF-12v1)]. Spearman correlation coefficients determined the associations between the ISM-SAF© total symptom score (TSS) and SF-12v1 scores. ISM burden was compared based on moderate/severe compared to mild TSS scores using Kruskal-Wallis and Fisher's Exact tests.

Results: Patients were aged 56.0±13.0 years, 65.0% female, 62.5% White and 22.5% Hispanic patients. ISM diagnosis took >2 years in 40%, required ≥6 visits in 47.5%, and was considered moderately/extremely difficult in 50% of patients. Nearly half experienced symptoms daily and rated severity somewhat/ significantly worsened since diagnosis. The overall TSS was 27.4±16.2 (mean±SD). SF-12 Physical Component Summary (PCS) (46.7±11.4) and Mental Component Summary (MCS) (47.6±10.2) scores were lower than the general population score of 50. Moderate correlations (P<.001) were found between TSS and the PCS (ρ = -0.6406; p<.001) and MCS (ρ = -0.5104; p<.001). Compared to patients with mild severity (TSS<28; n=21), patients with moderate/severe severity (TSS≥28; n=19) evidenced significantly higher skin and gastrointestinal symptom scores (both, P≤.001). ISM's impact on ability to work for pay was associated with TSS (P=.004). Symptom-directed treatment had limited effect.

Conclusions: ISM was self-reported as a burdensome condition in half the patients which markedly affected daily living.

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来源期刊

Journal of Allergy and Clinical Immunology-In Practice ALLERGYIMMUNOLOGY-IMMUNOLOGY

CiteScore

11.10

自引率

9.60%

发文量

683

审稿时长

50 days

期刊介绍： JACI: In Practice is an official publication of the American Academy of Allergy, Asthma & Immunology (AAAAI). It is a companion title to The Journal of Allergy and Clinical Immunology, and it aims to provide timely clinical papers, case reports, and management recommendations to clinical allergists and other physicians dealing with allergic and immunologic diseases in their practice. The mission of JACI: In Practice is to offer valid and impactful information that supports evidence-based clinical decisions in the diagnosis and management of asthma, allergies, immunologic conditions, and related diseases. This journal publishes articles on various conditions treated by allergist-immunologists, including food allergy, respiratory disorders (such as asthma, rhinitis, nasal polyps, sinusitis, cough, ABPA, and hypersensitivity pneumonitis), drug allergy, insect sting allergy, anaphylaxis, dermatologic disorders (such as atopic dermatitis, contact dermatitis, urticaria, angioedema, and HAE), immunodeficiency, autoinflammatory syndromes, eosinophilic disorders, and mast cell disorders. The focus of the journal is on providing cutting-edge clinical information that practitioners can use in their everyday practice or to acquire new knowledge and skills for the benefit of their patients. However, mechanistic or translational studies without immediate or near future clinical relevance, as well as animal studies, are not within the scope of the journal.

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