Occupational performance patterns in children with paediatric acute-onset neuropsychiatric syndrome

IF 1.6 4区医学 Q2 REHABILITATION

Australian Occupational Therapy Journal Pub Date : 2024-10-07 DOI:10.1111/1440-1630.12995

Michelle J. Newby, Shelly J. Lane, Kirsti Haracz, Janice Tona, Kerrin Palazzi, David Lambkin

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引用次数: 0

Abstract

Introduction

Paediatric acute-onset neuropsychiatric syndrome (PANS) is a neuroimmune condition characterised by episodic exacerbations and remissions. This study investigates the impact of PANS on children's occupational performance during these phases, using the Vineland Adaptive Behaviour Scale (VABS). Understanding these variations is crucial for developing tailored interventions and managing the condition effectively.

Methods

A two-period bidirectional case-crossover design was employed to assess occupational performance in children with PANS at exacerbation (T-E) and remission (T-R) phases. Parents of children aged 4.6–13.1 years with PANS were recruited globally, with data collected via online surveys and monthly updates. The VABS evaluated occupational performance, with analysis using linear mixed models and Least Squares Means (LSMeans) for accurate representation.

Results

Data from 27 participants showed significantly lower scores in the Adaptive Behaviour Composite and socialisation domain of the VABS at T-E compared with T-R, indicating a decline in occupational performance and social skills during exacerbations. During remission, participants demonstrated typical performance across all domains.

Conclusion

The study highlights a marked decline in occupational performance and socialisation during PANS exacerbations, with improvements to typical levels during remission. These findings emphasise the need for targeted interventions to address occupational and social challenges in children with PANS during exacerbations, underscoring the episodic nature of the condition and the risk of misinterpreting behaviours if assessed during exacerbations. Multidisciplinary allied health support may benefit children with PANS.

Consumer and community involvement

Although there was no direct consumer and community involvement, two researchers on our team have family members with PANS. Their personal experiences provided vital insights into the challenges faced by children with PANS, deeply influencing our study's design, focus, and interpretation, ensuring it reflects the realities of those affected.

PLAIN LANGUAGE SUMMARY

Our study looked at how PANS affects the things children do in their daily lives. We asked parents of children ages 4.6–13.1 years old to complete surveys measuring this at two times: once during a symptom flare-up and once during a period of wellness. Our results showed that during symptom flare-ups, children's social skills and general ability to do daily tasks were much lower compared with periods of wellness. When children were well, their abilities were similar to those of typically developing children of the same age. This highlights the need for occupational therapy during flare-ups to help improve the lives of children with PANS.

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儿科急性神经精神综合征患儿的职业表现模式。

简介儿科急性发作性神经精神综合征（PANS）是一种神经免疫性疾病，其特点是发作性加重和缓解。本研究使用文兰适应行为量表（VABS）调查了 PANS 在这些阶段对儿童职业表现的影响。了解这些变化对于制定有针对性的干预措施和有效管理病情至关重要：采用两期双向病例交叉设计，评估 PANS 患儿在病情加重期（T-E）和缓解期（T-R）的职业表现。在全球范围内招募了 4.6-13.1 岁 PANS 患儿的家长，通过在线调查和每月更新收集数据。VABS评估职业表现，采用线性混合模型和最小二乘法均值（LSMeans）进行分析，以准确反映结果：27名参与者的数据显示，与T-R相比，T-E时VABS的适应行为综合和社交领域的得分明显较低，这表明病情恶化期间，参与者的职业表现和社交技能有所下降。在缓解期，参与者在所有领域都表现出典型的表现：本研究强调了在 PANS 病情加重期间职业表现和社交能力的明显下降，而在缓解期间则有所改善，达到了典型水平。这些研究结果强调，有必要采取有针对性的干预措施，以解决 PANS 患儿在病情加重期间面临的职业和社交挑战，同时强调了该病症的偶发性，以及在病情加重期间进行评估可能会误解患儿行为的风险。多学科联合医疗支持可能会使PANS患儿受益：虽然没有直接的消费者和社区参与，但我们团队中的两名研究人员都有 PANS 患者家属。他们的亲身经历为我们提供了有关 PANS 儿童所面临挑战的重要见解，对我们研究的设计、重点和解释产生了深远影响，确保我们的研究能够反映受影响者的真实情况。平实的语言总结：我们的研究探讨了 PANS 如何影响儿童日常生活中的事情。我们要求 4.6-13.1 岁儿童的父母在两个时间段完成调查，分别测量症状发作期和康复期的情况。结果显示，在症状发作期，儿童的社交能力和完成日常任务的一般能力比健康期低得多。而在康复期，儿童的能力与同龄发育正常的儿童相近。这凸显了在症状发作期间进行职业治疗的必要性，有助于改善PANS患儿的生活。

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来源期刊

Australian Occupational Therapy Journal 医学-康复医学

CiteScore

2.80

自引率

16.70%

发文量

审稿时长

6-12 weeks

期刊介绍： The Australian Occupational Therapy Journal is a leading international peer reviewed publication presenting influential, high quality innovative scholarship and research relevant to occupational therapy. The aim of the journal is to be a leader in the dissemination of scholarship and evidence to substantiate, influence and shape policy and occupational therapy practice locally and globally. The journal publishes empirical studies, theoretical papers, and reviews. Preference will be given to manuscripts that have a sound theoretical basis, methodological rigour with sufficient scope and scale to make important new contributions to the occupational therapy body of knowledge. AOTJ does not publish protocols for any study design The journal will consider multidisciplinary or interprofessional studies that include occupational therapy, occupational therapists or occupational therapy students, so long as ‘key points’ highlight the specific implications for occupational therapy, occupational therapists and/or occupational therapy students and/or consumers.