Enhancing quality of life through patient education and support in autoimmune blistering diseases: a prospective cohort study

IF 2.5 4区医学 Q3 DERMATOLOGY

Archives of Dermatological Research Pub Date : 2026-09-30 DOI:10.1007/s00403-026-04994-w

Madeline L. Lillich, Emma L. Myers, Brittney Schultz, Rebecca Strong, Heather M. Holahan, Sahar Mirfarsi, Jun Lu, Marney A. White, Donna A. Culton

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引用次数: 0

Abstract

Autoimmune blistering diseases (AIBD) are rare, chronic conditions that significantly impair quality of life (QoL). While retrospective studies have shown that support groups (SGs) improve QoL, structured patient support interventions and prospective data remain limited. We conducted a prospective cohort study to evaluate whether participation in a six-session virtual education and peer support program improved disease-specific quality of life (QoL) among adults with biopsy-confirmed AIBD. Disease-specific QoL was measured using the Autoimmune Bullous Disease Quality of Life (ABQoL) questionnaire pre- and post-intervention. Controls included patients who declined or did not attend sessions. Fifty-nine participants completed the ABQoL questionnaire at baseline and after six months; 31 attended at least one session and 28 served as controls. Baseline ABQoL scores were similar between groups. Post-intervention, total ABQoL scores improved among participants and worsened among controls, with a significant group-by-time interaction (p = 0.001). Improvements were observed across symptom, mucosal, and psychosocial domains and correlated with greater session attendance. Most participants in the intervention group (73.3%) demonstrated improved ABQoL scores. These findings suggest that structured virtual education combined with peer support may meaningfully enhance quality of life and provide a scalable adjunct to routine dermatologic care for patients living with AIBD.

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通过自身免疫性水疱疾病患者教育和支持提高生活质量：一项前瞻性队列研究

自身免疫性水疱病（AIBD）是一种罕见的慢性疾病，严重影响生活质量（QoL）。虽然回顾性研究表明支持小组（SGs）改善了生活质量，但结构化的患者支持干预和前瞻性数据仍然有限。我们进行了一项前瞻性队列研究，以评估参与六期虚拟教育和同伴支持计划是否能改善活检确诊的AIBD成人的疾病特异性生活质量（QoL）。采用自身免疫性大疱病生活质量（ABQoL）问卷在干预前后测量疾病特异性生活质量。对照组包括拒绝或不参加治疗的患者。59名参与者在基线和6个月后完成了ABQoL问卷；31人至少参加了一次会议，28人作为对照组。各组间基线ABQoL评分相似。干预后，受试者的ABQoL总分改善，对照组的ABQoL总分恶化，组间时间交互作用显著（p = 0.001）。在症状、粘膜和心理社会领域观察到改善，并与更高的会议出席率相关。干预组大多数参与者（73.3%）表现出ABQoL得分提高。这些研究结果表明，结构化的虚拟教育与同伴支持相结合可以有效地提高生活质量，并为AIBD患者的常规皮肤护理提供可扩展的辅助。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Archives of Dermatological Research 医学-皮肤病学

CiteScore

4.10

自引率

3.30%

发文量

审稿时长

4-8 weeks

期刊介绍： Archives of Dermatological Research is a highly rated international journal that publishes original contributions in the field of experimental dermatology, including papers on biochemistry, morphology and immunology of the skin. The journal is among the few not related to dermatological associations or belonging to respective societies which guarantees complete independence. This English-language journal also offers a platform for review articles in areas of interest for dermatologists and for publication of innovative clinical trials.