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镰状细胞病患儿的疲劳:与神经认知、社会情感功能及生活质量的关联

Fatigue in Children With Sickle Cell Disease: Association With Neurocognitive and Social-Emotional Functioning and Quality of Life.

作者信息

Anderson Lindsay M, Allen Taryn M, Thornburg Courtney D, Bonner Melanie J

机构信息

*Department of Psychology and Neuroscience, Duke University §Department of Psychiatry, Duke University Medical Center, Durham, NC †Department of Psychiatry and Behavioral Sciences, Johns Hopkins Medicine, Baltimore, MD ‡Department of Pediatrics, University of California San Diego, La Jolla, CA.

出版信息

J Pediatr Hematol Oncol. 2015 Nov;37(8):584-9. doi: 10.1097/MPH.0000000000000431.

Abstract

Children with sickle cell disease (SCD) report fatigue in addition to acute and chronic pain, which can decrease overall health-related quality of life (HRQL). The primary objective of the current study was to investigate the relationship between fatigue and HRQL. Given limited prior research, secondary objectives included investigation of associations between fatigue and functional outcomes, including child neurocognitive and social-emotional functioning. Children aged 8 to 16 years (N=32) and a caregiver completed measures of fatigue, HRQL, pain, and neurocognitive and social-emotional functioning. Controlling for pain and number of SCD-related hospitalizations, hierarchical linear regression models were used to determine the impact of child-reported and parent-reported fatigue on child HRQL. Correlational analyses were used to explore the relationship between fatigue and additional child outcomes. Data indicated that children with SCD experience clinically relevant levels of fatigue, which independently predicts lower HRQL. Fatigue was also associated with lower working memory, executive functioning, and higher levels of internalizing symptoms. Given its observed impact on HRQL and relationship to functional outcomes, fatigue may be an important target of clinical, home, or school interventions. This practice may attenuate the burden of fatigue in these patients, and in turn, help improve the quality of life of children living with SCD.

摘要

患有镰状细胞病(SCD)的儿童除了有急性和慢性疼痛外,还会感到疲劳,这会降低总体健康相关生活质量(HRQL)。本研究的主要目的是调查疲劳与HRQL之间的关系。鉴于先前的研究有限,次要目的包括调查疲劳与功能结局之间的关联,包括儿童神经认知和社会情感功能。8至16岁的儿童(N = 32)及其照顾者完成了疲劳、HRQL、疼痛以及神经认知和社会情感功能的测量。在控制疼痛和与SCD相关的住院次数后,使用分层线性回归模型来确定儿童报告的和父母报告的疲劳对儿童HRQL的影响。相关性分析用于探索疲劳与其他儿童结局之间的关系。数据表明,患有SCD的儿童经历了具有临床意义的疲劳水平,这独立预测了较低的HRQL。疲劳还与较低的工作记忆、执行功能以及较高水平的内化症状有关。鉴于其对HRQL的观察到的影响以及与功能结局的关系,疲劳可能是临床、家庭或学校干预的重要目标。这种做法可能会减轻这些患者的疲劳负担,进而有助于改善患有SCD的儿童的生活质量。

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