Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child.

IF 2.4 3区心理学 Q2 PSYCHOLOGY, MULTIDISCIPLINARY Psychology & Health Pub Date : 2025-03-01 Epub Date: 2023-07-05 DOI:10.1080/08870446.2023.2231489

Gareth McCray, Holly F Hope, Claire Glasscoe, Jonathan Hill, Alexandra Quittner, Kevin W Southern, Gillian A Lancaster

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Abstract

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 (r = 0.48) and child treatment management (r = 0.45), and discriminated between unwell and well children with CF (Mean Difference 5.5, 95%CI 2.5-8.5, p < 0.001), and recent or no hospital admission (MD 3.6, 95%CI 0.25-6.95, p = 0.039).

Conclusion: The CLCF-SF provides a robust 15-item tool for assessing the challenge of living with a child with CF.

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开发和验证一种简短的心理测量工具，评估患有囊性纤维化(CLCF-SF)儿童的护理挑战。

目的:照顾患有囊性纤维化(CF)的儿童是照顾者的一项严格的日常承诺，治疗负担是一个主要问题。我们的目标是开发和验证一个简短版本的46项工具评估囊性纤维化(CLCF)的临床或研究使用的挑战。设计:利用135个家庭的数据，采用一种基于从预先指定的一组标准中“进化”项目子集的新型遗传算法来优化工具。主要结局指标:评估内部信度和效度;后者将得分与父母幸福感、治疗负担标志和疾病严重程度的有效测试进行比较。结果:15项CLCF-SF表现出非常好的内部一致性[Cronbach's alpha 0.82 (95%CI 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(STAI-State, Rho = 0.41;sti - trait, Rho = 0.43)，囊性纤维化问卷-修订，肺功能(Rho = -0.37)，护理人员治疗管理(r = 0.48)和儿童治疗管理(r = 0.45)，并区分CF患儿不适和健康(平均差异5.5,95%CI 2.5-8.5, p p = 0.039)。结论:CLCF-SF提供了一个强大的15项工具来评估与患有CF的儿童一起生活的挑战。

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来源期刊

Psychology & Health Multiple-

CiteScore

7.30

自引率

3.00%

发文量

期刊介绍： Psychology & Health promotes the study and application of psychological approaches to health and illness. The contents include work on psychological aspects of physical illness, treatment processes and recovery; psychosocial factors in the aetiology of physical illnesses; health attitudes and behaviour, including prevention; the individual-health care system interface particularly communication and psychologically-based interventions. The journal publishes original research, and accepts not only papers describing rigorous empirical work, including meta-analyses, but also those outlining new psychological approaches and interventions in health-related fields.