一种评估儿童囊性纤维化生活护理挑战的简短心理测量工具（CLCF-SF）的开发与验证
Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child.
作者信息
McCray Gareth, Hope Holly F, Glasscoe Claire, Hill Jonathan, Quittner Alexandra, Southern Kevin W, Lancaster Gillian A
机构信息
School of Medicine, Keele University, Keele, UK.
Division of Psychology and Mental Health, Centre for Women's Mental Health, University of Manchester, Manchester, UK.
出版信息
Psychol Health. 2025 Mar;40(3):410-432. doi: 10.1080/08870446.2023.2231489. Epub 2023 Jul 5.
OBJECTIVE
Caring for a child with cystic fibrosis (CF) is a rigorous daily commitment for caregivers and treatment burden is a major concern. We aimed to develop and validate a short form version of a 46-item tool assessing the Challenge of Living with Cystic Fibrosis (CLCF) for clinical or research use.
DESIGN
A novel genetic algorithm based on 'evolving' a subset of items from a pre-specified set of criteria, was applied to optimise the tool, using data from 135 families.
MAIN OUTCOME MEASURES
Internal reliability and validity were assessed; the latter compared scores to validated tests of parental well-being, markers of treatment burden, and disease severity.
RESULTS
The 15-item CLCF-SF demonstrated very good internal consistency [Cronbach's alpha 0.82 (95%CI 0.78-0.87)]. Scores for convergent validity correlated with the Beck Depression Inventory (Rho = 0.48), State Trait Anxiety Inventory (STAI-State, Rho = 0.41; STAI-Trait, Rho = 0.43), Cystic Fibrosis Questionnaire-Revised, lung function (Rho = -0.37), caregiver treatment management ( = 0.48) and child treatment management ( = 0.45), and discriminated between unwell and well children with CF (Mean Difference 5.5, 95%CI 2.5-8.5, < 0.001), and recent or no hospital admission (MD 3.6, 95%CI 0.25-6.95, = 0.039).
CONCLUSION
The CLCF-SF provides a robust 15-item tool for assessing the challenge of living with a child with CF.
目的
对囊性纤维化（CF）患儿进行护理，对护理人员来说是一项日常的艰巨任务，治疗负担是一个主要问题。我们旨在开发并验证一个简短版的46项工具，用于评估囊性纤维化生活挑战（CLCF），以供临床或研究使用。
设计
应用一种基于从预先指定的标准集中“演化”项目子集的新型遗传算法，利用135个家庭的数据对该工具进行优化。
主要观察指标
评估内部信度和效度；后者将分数与经过验证的父母幸福感测试、治疗负担指标和疾病严重程度进行比较。
结果
15项的CLCF-SF表现出非常好的内部一致性[克朗巴哈α系数为0.82（95%置信区间0.78 - 0.87）]。收敛效度得分与贝克抑郁量表（Rho = 0.48）、状态特质焦虑量表（状态焦虑，Rho = 0.41；特质焦虑，Rho = 0.43）、囊性纤维化问卷修订版、肺功能（Rho = -0.37）、护理人员治疗管理（ = 0.48）和儿童治疗管理（ = 0.45）相关，并能区分CF患儿的不适和健康状态（平均差异5.5，95%置信区间2.5 - 8.5， < 0.001），以及近期是否住院（MD 3.6，95%置信区间0.25 - 6.95， = 0.039）。
结论
CLCF-SF提供了一个强大的15项工具，用于评估照顾CF患儿的生活挑战。
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