de Kloet Arend J, Lambregts Suzanne A M, Berger Monique A M, van Markus Frederike, Wolterbeek Ron, Vliet Vlieland Thea P M
*The Hague University of Applied Sciences, The Hague, the Netherlands; †Sophia Rehabilitation, The Hague, the Netherlands; ‡Revant Rehabilitation Centre, Breda, the Netherlands; §Department of Medical Statistics, Leiden University Medical Center, Leiden, the Netherlands; ‖Department of Orthopaedics, Leiden University Medical Center, Leiden, the Netherlands.
J Dev Behav Pediatr. 2015 Jun;36(5):342-51. doi: 10.1097/DBP.0000000000000169.
To assess the parental view on the impact of pediatric traumatic brain injury (TBI) and nontraumatic brain injury (NTBI) on the family and its determinants.
Follow-up study including parents of children with a hospital-based diagnosis of acquired brain injury (ABI) aged 4-20 years at onset of ABI. Parents completed the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM), which measures Parent Health-Related Quality of Life, Family Functioning, Communication, and Worry. Additional assessments included the Pediatric Stroke Outcome Measure (PSOM), the Child & Family Follow-up Survey (CFFS), PedsQL General Core and Multiple Fatigue Scales, and sociodemographic and disease characteristics.
Parents of 108 patients, median age 13 years (range 5-22), completed the questionnaires 24-30 months after diagnosis. There were 81 patients with TBI of whom 11 (14%) with moderate/severe TBI and 27 patients with NTBI of whom 5 (19%) with moderate/severe NTBI. The median PedsQL FIM Total Scale was 80.4 (SD 16.1). The PedsQL FIM Total Scale and 4 out of 5 Subscale Scores were statistically significantly better in the TBI group than in the NTBI group and in patients with severe NTBI than with mild/moderate NTBI. Moreover, in the total group, there were significant univariate associations between the FIM Total Scale and/or one or more Subscale Scores and age, preinjury patient health problems, and the PSOM, CFFS, PedsQL General Core, and Multiple Fatigue Scales. In the multivariable analysis, the FIM Total Scale was significantly associated with type and severity of injury and preinjury patient health problems.
Two years after onset, the parent-reported that impact of ABI on the family as measured by the PedsQL FIM was considerable especially in patients with moderate/severe NTBI.
评估家长对小儿创伤性脑损伤（TBI）和非创伤性脑损伤（NTBI）对家庭的影响及其决定因素的看法。
随访研究，纳入在获得性脑损伤（ABI）发病时年龄为4至20岁、以医院诊断为基础的ABI患儿的家长。家长完成了儿童生活质量量表家庭影响模块（PedsQL FIM），该量表用于测量家长与健康相关的生活质量、家庭功能、沟通和担忧情况。其他评估包括小儿卒中结局量表（PSOM）、儿童与家庭随访调查（CFFS）、PedsQL通用核心量表和多重疲劳量表，以及社会人口统计学和疾病特征。
108例患者的家长（中位年龄13岁，范围5至22岁）在诊断后24至30个月完成了问卷调查。其中81例为TBI患者，其中11例（14%）为中度/重度TBI；27例为NTBI患者，其中5例（19%）为中度/重度NTBI。PedsQL FIM总量表的中位数为80.4（标准差16.1）。TBI组的PedsQL FIM总量表及5个分量表得分中的4个在统计学上显著高于NTBI组，重度NTBI患者的得分高于轻度/中度NTBI患者。此外，在整个研究组中，FIM总量表和/或一个或多个分量表得分与年龄、伤前患者健康问题以及PSOM、CFFS、PedsQL通用核心量表和多重疲劳量表之间存在显著的单变量关联。在多变量分析中，FIM总量表与损伤类型和严重程度以及伤前患者健康问题显著相关。
发病两年后，家长报告称，以PedsQL FIM衡量，ABI对家庭的影响相当大，尤其是在中度/重度NTBI患者中。
