Molnár-Hevér Dalma, Bejek Zoltán, Domos Gyula, Firnigel Brigitta, Horváth Nikoletta, Kiss Sándor, L'Auné Gerda, Skaliczki Gábor, Szakály Norbert, Szőke György, Vezér Mátyás, Narayanan Unni G, Terebessy Tamás
1 Semmelweis Egyetem, Általános Orvostudományi Kar, Ortopédiai Klinika Budapest, Üllői út 26., 1085 Magyarország.
2 Dél-pesti Centrumkórház - Országos Hematológiai és Infektológiai Intézet, Merényi Gusztáv Kórház Telephely, Traumatológiai Osztály Budapest Magyarország.
Orv Hetil. 2023 Apr 23;164(16):610-617. doi: 10.1556/650.2023.32743.
Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire is a measurement tool for assessing health status and wellbeing of disabled children, which evaluates children's quality of life from the caregiver point of view.
The aim of our work was the Hungarian translation and cultural adaptation of the questionnaire and also validation of the CPCHILD on Hungarian cerebral palsy patients. Further aim was to test the eligibility of the questionnaire for superficial assessment of caregiver's psychological attitudes.
Translation of the questionnaire was carried out according to the Beaton's guidelines. Test-retest, interrater reliability (ICC) and also internal consistency (Cronbach-alpha) were calculated for reliability. The importance of the questions was assessed for face validity and known group validity test was done to measure construct validity. For examining parental attitudes, the patients were divided into ambulatory and non-ambulatory groups and the 36 quality of life questions of the 7th domain were used to find relations.
During test-retest reliability measurements, the ICC was 0.96 (95% CI: 0.88-0.98), and Cronbach-alpha exceeded the minimal expected value of 0.7 (0.74-0.97) except in the 5th domain (0.67), while measuring interrater reliability the ICC was 0.87 (95% CI 0.70-0.94). Face validity was above the 2.0 threshold in every question (2.6-4.5; mean: 3.4 ± 1.34) and the known group validity calculations showed significant differences between the CPCHILD scores of ambulatory and non-ambulatory groups. Examining parental attitudes, a significant difference was also shown among the parents of ambulatory and non-ambulatory children in assessing the importance of sitting in the quality of life of their children (2.89 ± 1.28 vs. 3.51 ± 0.82; p<0.01).
The final outcome of our study is that CPCHILD questionnaire has become widely accessible in Hungarian language. Our result, that the answers referring to the sitting abilities and the activities should be carried out in sitting position, was significantly different among the caregivers of the ambulatory and non-ambulatory children, showing that the parents of the GMFCS IV and V category children evaluate the importance of sitting ability higher compared to those parents who care for GMFCS I, II and III category children. Furthermore, the results draw attention to the wellbeing and health of the children measurable with CPCHILD as well as that parental caregiver attitudes can be recognized which may give further help in finding the balance between expectations and possibilities during the rehabilitation of cerebral palsy children. Orv Hetil. 2023; 164(16): 610-617.
照顾者优先事项与残疾儿童生活健康指数（CPCHILD）问卷是一种用于评估残疾儿童健康状况和幸福感的测量工具，它从照顾者的角度评估儿童的生活质量。
我们的工作目标是对该问卷进行匈牙利语翻译和文化调适，并在匈牙利脑瘫患者中对CPCHILD进行验证。进一步的目标是测试该问卷用于初步评估照顾者心理态度的适用性。
根据比顿指南对问卷进行翻译。计算重测信度、评分者间信度（ICC）以及内部一致性（克朗巴哈α系数）以评估信度。评估问题的重要性以检验表面效度，并进行已知组效度测试以测量结构效度。为了研究家长的态度，将患者分为能行走组和不能行走组，并使用第7个领域的36个生活质量问题来寻找两者之间的关系。
在重测信度测量中，ICC为0.96（95%CI：0.88 - 0.98），除第5个领域（0.67）外，克朗巴哈α系数超过了预期最小值0.7（0.74 - 0.97）；在测量评分者间信度时，ICC为0.87（95%CI 0.70 - 0.94）。每个问题的表面效度均高于2.0阈值（2.6 - 4.5；平均值：3.4±1.34），已知组效度计算表明能行走组和不能行走组的CPCHILD得分存在显著差异。在研究家长态度时，能行走和不能行走儿童的家长在评估坐姿对孩子生活质量的重要性方面也存在显著差异（2.89±1.28对3.51±0.82；p<0.01）。
我们研究的最终结果是CPCHILD问卷已能以匈牙利语广泛获取。我们的研究结果表明，在能行走和不能行走儿童的照顾者中，关于坐姿能力和活动应采取坐姿进行的回答存在显著差异，这表明与照顾GMFCS I、II和III级儿童的家长相比，GMFCS IV和V级儿童的家长更看重坐姿能力的重要性。此外，研究结果还提醒人们注意CPCHILD可测量的儿童幸福感和健康状况，以及能够识别家长照顾者的态度，这可能有助于在脑瘫儿童康复过程中更好地平衡期望与可能性。《匈牙利医学周报》。2023年；164(16): 610 - 617。
