囊性纤维化患儿的兄弟姐妹：生活质量与疾病影响
Siblings of children with cystic fibrosis: quality of life and the impact of illness.
作者信息
Havermans T, Wuytack L, Deboel J, Tijtgat A, Malfroot A, De Boeck C, Proesmans M
机构信息
Cystic Fibrosis Centre, UZ Leuven, Leuven, Belgium.
出版信息
Child Care Health Dev. 2011 Mar;37(2):252-60. doi: 10.1111/j.1365-2214.2010.01165.x. Epub 2010 Nov 18.
OBJECTIVE
To asses self-reported quality of life (QoL) and perception of impact of illness on siblings of children with cystic fibrosis (CF).
METHODS
The Child Health Questionnaire was used to assess QoL. The Sibling Perception Questionnaire was used to assess impact of illness.
RESULTS
Siblings of children with CF (n= 39) rated their QoL higher than siblings of healthy children on most QoL domains (e.g. Physical Functioning, Behavior, Mental Health). Siblings older than the child with CF reported a higher impact of CF than younger siblings. Perceived impact of illness was higher when the child with CF had been hospitalized or was intermittent or chronically infected with Pseudomonas aeruginosa.
CONCLUSIONS
Siblings of children with CF reported a good QoL. QoL and impact of illness were related to indices of CF severity. Insight into sibling-issues helps CF teams to provide family-oriented care.
目的
评估囊性纤维化（CF）患儿同胞自我报告的生活质量（QoL）以及疾病对其的影响认知。
方法
采用儿童健康问卷评估生活质量。采用同胞认知问卷评估疾病影响。
结果
CF患儿的同胞（n = 39）在大多数生活质量领域（如身体功能、行为、心理健康）对自身生活质量的评分高于健康儿童的同胞。CF患儿年长的同胞报告称CF的影响比年幼的同胞更大。当CF患儿住院或间歇性或慢性感染铜绿假单胞菌时，疾病的感知影响更高。
结论
CF患儿的同胞报告生活质量良好。生活质量和疾病影响与CF严重程度指标相关。深入了解同胞问题有助于CF团队提供以家庭为导向的护理。
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