Goren Rachel, Bitnun Ari, Doja Asif, Gill Peter J, Laxer Ronald M, Levy Deborah M, Pringsheim Tamara, Sandor Paul, Yeh Eluen Ann, Wilbur Colin, Kronenberg Sefi, Shouldice Michelle
Department of Pediatrics, University of Toronto, Toronto, Ontario.
Division of Infectious Diseases, Hospital for Sick Children, Toronto, Ontario.
Paediatr Child Health. 2024 Dec 23;30(3):157-163. doi: 10.1093/pch/pxae092. eCollection 2025 Jun.
This study aims to estimate the prevalence of the PANS/PANDAS diagnostic label in Canada and describe its impact on families, patients, and health care.
Through the Canadian Paediatric Surveillance Program (CPSP), a monthly form was distributed to paediatricians from December 2019 to November 2021, requesting reports of children who received the diagnostic label of PANS/PANDAS between the ages of 3 and 18 years seen in the previous month. Descriptive and association statistical analyses were performed.
Eighty-four cases (57% female, median age of symptom onset 7.8 years interquartile range [IQR] = 5) who received the diagnostic label of PANS/PANDAS were included. Prevalence was found to be 1 in 60,155 (0.0017%). Core diagnostic criteria for PANS/PANDAS (obsessive-compulsive disorder or tics or acute food refusal) were not present in 12% of cases (10/84). Only 22% reported sudden symptom onset. Infection was associated with symptom onset or exacerbation in less than one-third of cases. The majority exhibited two or more neuropsychiatric symptoms (95%). There was significant health care utilization and symptom burden amongst cases. There was a significant difference in the certainty of diagnosis between physicians and families (P < 0.05).
PANS/PANDAS diagnoses, while rare, significantly impact children, families, and the health care system. Diagnostic uncertainty underscores the challenges professionals and families face in accessing effective care, emphasizing the need for education and evidence-based clinical practice guidelines.
本研究旨在评估加拿大PANS/PANDAS诊断标签的流行率，并描述其对家庭、患者和医疗保健的影响。
通过加拿大儿科学监测计划（CPSP），从2019年12月至2021年11月每月向儿科医生分发一份表格，要求报告上个月诊治的3至18岁接受PANS/PANDAS诊断标签的儿童。进行了描述性和关联性统计分析。
纳入了84例接受PANS/PANDAS诊断标签的病例（57%为女性，症状发作的中位年龄为7.8岁，四分位间距[IQR]=5）。发现流行率为1/60155（0.0017%）。12%的病例（10/84）不存在PANS/PANDAS的核心诊断标准（强迫症或抽动或急性食物拒食）。只有22%报告症状突然发作。不到三分之一的病例中感染与症状发作或加重相关。大多数病例表现出两种或更多的神经精神症状（95%）。病例中存在显著的医疗保健利用和症状负担。医生和家庭在诊断确定性方面存在显著差异（P<0.05）。
PANS/PANDAS诊断虽然罕见，但对儿童、家庭和医疗保健系统有重大影响。诊断的不确定性凸显了专业人员和家庭在获得有效治疗方面面临的挑战，强调了教育和基于证据的临床实践指南的必要性。
