Pediatric Infectious Diseases & Immunology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
School of Health Care Studies, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.
J Clin Immunol. 2022 Aug;42(6):1223-1229. doi: 10.1007/s10875-022-01282-w. Epub 2022 May 10.
Although fatigue is a common symptom in adult patients with primary immunodeficiencies (PID), data in pediatric patients are limited. The goal of this study is to estimate the prevalence and impact of fatigue in children with PID as reported by patients, parents, and health-care providers. A retrospective single-center observational study was performed. Prevalence of fatigue was measured by reviewing medical charts of 54 children in our department who are on immunoglobulin replacement therapy. Both prevalence and impact were also measured by the PedsQL-Multidimensional Fatigue Scale (MFS) in 27 patients and 32 of their parents. This is an age-appropriate questionnaire for self-report of fatigue symptoms in patients aged 5-18 years and for parent proxy reports for patients aged 2-18 years. General, cognitive, and sleep-rest fatigue was measured, and a total fatigue score was calculated. Means, standard deviation and Z scores were calculated using age-specific reference values. Intraclass correlation coefficients (ICC) were calculated for comparison of scores provided by parents vs children's self-reported scores. Both chart review data and PedsQL-MFS showed fatigue rates of 65%. Pediatric PID patients of all ages had significantly lower scores on all subscales and total score of the PedsQL-MFS compared to healthy children, indicating greater perceived symptoms of fatigue. General fatigue was the most affected subscale in PID patients, suggesting that fatigue in these patients is mainly physical. Seventy-four percent of PID patients had a Z score lower than - 1 on the general fatigue subscale indicating severe fatigue. Child-parent concordance varied between 0.24 and 0.93. Our results show the feasibility of the PedsQL-MFS survey to evaluate the prevalence and severity of fatigue in children with PID and underscore the importance of this issue in our patient care.
虽然疲劳是成人原发性免疫缺陷（PID）患者的常见症状，但儿科患者的数据有限。本研究的目的是评估患者、家长和医护人员报告的 PID 患儿疲劳的患病率和影响。进行了一项回顾性单中心观察性研究。通过回顾我们科室接受免疫球蛋白替代治疗的 54 名儿童的病历，评估疲劳的患病率。通过 PedsQL 多维疲劳量表（MFS）在 27 名患者和 32 名家长中测量患病率和影响。这是一种适合年龄的问卷，用于 5-18 岁患者的疲劳症状自评，以及 2-18 岁患者的家长代报告。测量一般、认知和睡眠-休息疲劳，并计算总疲劳评分。使用特定年龄的参考值计算平均值、标准差和 Z 分数。计算了家长提供的分数与儿童自我报告分数之间的组内相关系数（ICC）。病历回顾数据和 PedsQL-MFS 均显示疲劳发生率为 65%。与健康儿童相比，所有年龄段的儿科 PID 患者在 PedsQL-MFS 的所有子量表和总分上的得分均明显较低，表明他们感知到的疲劳症状更严重。一般疲劳是 PID 患者受影响最严重的子量表，表明这些患者的疲劳主要是身体上的。74%的 PID 患者在一般疲劳子量表上的 Z 分数低于-1，表明他们有严重的疲劳。PID 患儿的父母与患儿的一致性在 0.24 到 0.93 之间。我们的研究结果表明，PedsQL-MFS 调查能够评估 PID 患儿疲劳的患病率和严重程度，突出了这一问题在我们患者护理中的重要性。
