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PFAPA综合征患儿的生活质量和心理功能

Quality of Life and Psychological Functioning in Children with PFAPA Syndrome.

作者信息

García-Soto Xosé Ramón, Villanueva-Alameda Maria Isabel, Fernández-Solana Jessica, González-Bernal Jerónimo J, Bernal-Jiménez Arancha, Santos-Martín Lara, García-Mellado Juan, Calvo-Simal Sara, Vélez-Santamaría Rodrigo

机构信息

Clinical Psychology, University Hospital of Burgos, 09006 Burgos, Spain.

Department of Health Sciences, University of Burgos, 09001 Burgos, Spain.

出版信息

Pediatr Rep. 2025 Apr 22;17(3):51. doi: 10.3390/pediatric17030051.

DOI:10.3390/pediatric17030051
PMID:40407576
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12101420/
Abstract

BACKGROUND/OBJECTIVES: This study analyzes the impact of PFAPA syndrome (periodic fever, aphthous stomatitis, pharyngitis, and adenitis) on health-related quality of life (HRQoL) and the psychological functioning of children and adolescents aged 2 to 1 years.

METHODS

A cross-sectional descriptive study was conducted with 62 participants (31 males and 31 females) diagnosed with PFAPA. The Strengths and Difficulties Questionnaire (SDQ) and the Family Impact Module scale of Pediatric Quality of Life Inventory (PedsQL) were used to assess psychological functioning and HRQoL, respectively.

RESULTS

Participants exhibited predominantly low HRQoL, particularly in physical health and emotional functioning. School functioning was also affected. However, social functioning and family relationships showed more favorable scores. A positive correlation was observed between age and emotional symptoms. Family concern was the most significantly impacted aspect.

CONCLUSIONS

PFAPA syndrome has a significant impact on the HRQoL of affected children and adolescents, particularly in physical and emotional aspects. A holistic approach is necessary for disease management, considering not only physical symptoms but also psychosocial and academic factors, as well as the impact on the family.

摘要

背景/目的:本研究分析周期性发热、口疮性口炎、咽炎和腺炎综合征(PFAPA综合征)对2至11岁儿童及青少年的健康相关生活质量(HRQoL)以及心理功能的影响。

方法

对62名被诊断为PFAPA综合征的参与者(31名男性和31名女性)进行了一项横断面描述性研究。分别使用长处与困难问卷(SDQ)和儿童生活质量量表(PedsQL)的家庭影响模块来评估心理功能和HRQoL。

结果

参与者的HRQoL大多较低,尤其是在身体健康和情绪功能方面。学校功能也受到了影响。然而,社交功能和家庭关系得分更为良好。年龄与情绪症状之间存在正相关。家庭关注度是受影响最显著的方面。

结论

PFAPA综合征对受影响的儿童及青少年的HRQoL有显著影响,尤其是在身体和情绪方面。疾病管理需要采取整体方法,不仅要考虑身体症状,还要考虑心理社会和学业因素以及对家庭的影响。

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本文引用的文献

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The evaluation of depression and anxiety levels of mothers of patients with periodic fever, aphthous stomatitis, pharyngitis, and adenitis syndrome and familial Mediterranean fever.周期性发热、口疮性口炎、咽炎和淋巴结炎综合征和家族性地中海热患者的母亲的抑郁和焦虑水平评估。
Postgrad Med. 2024 Apr;136(3):331-336. doi: 10.1080/00325481.2024.2347829. Epub 2024 Apr 29.
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Inflammation and emotion regulation: a narrative review of evidence and mechanisms in emotion dysregulation disorders.炎症与情绪调节:关于情绪调节障碍中证据与机制的叙述性综述
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[Síndrome de fiebre periódica, adenitis, faringitis y aftosis en un preescolar con síndrome de Asperger: reporte de caso].[一名患有阿斯伯格综合征的学龄前儿童出现周期性发热、腺炎、咽炎和口疮:病例报告]
Rev Alerg Mex. 2023 Sep;70(4):200. doi: 10.29262/ram.v70i3.1260.
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Extreme Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis (PFAPA): a discrete group of patients.极期型周期性发热、口疮性口炎、咽炎、颈淋巴结炎综合征(PFAPA):一组明确的患者。
Pediatr Rheumatol Online J. 2023 Sep 1;21(1):93. doi: 10.1186/s12969-023-00880-1.
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Tonsillectomy reduces the family impact of periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis (PFAPA) syndrome and improves health-related quality of life in affected children.扁桃体切除术可降低周期性发热、口疮性口炎、咽炎和颈淋巴结炎(PFAPA)综合征对家庭的影响,并改善受影响儿童的生活质量。
Orphanet J Rare Dis. 2023 Jun 20;18(1):153. doi: 10.1186/s13023-023-02773-8.
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Autoimmune Neuroinflammatory Diseases: Role of Interleukins.自身免疫性神经炎症性疾病:白细胞介素的作用。
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A systematic review of associations between emotion regulation characteristics and inflammation.情绪调节特征与炎症之间关系的系统综述
Neurosci Biobehav Rev. 2023 Jul;150:105162. doi: 10.1016/j.neubiorev.2023.105162. Epub 2023 Apr 5.
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Epidemiology and clinical features of PFAPA: a retrospective cohort study of 336 patients in western Sweden.PFAPA 的流行病学和临床特征:瑞典西部 336 例患者的回顾性队列研究。
Pediatr Rheumatol Online J. 2022 Sep 15;20(1):82. doi: 10.1186/s12969-022-00737-z.
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Nonpharmacological Compensation of Aggressive Behavior of Individuals with Moderate Intellectual Disability and Behavioral Disorders-A Case Study.非药物补偿中度智力残疾和行为障碍个体的攻击性行为:个案研究。
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