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重型β地中海贫血患儿的适应功能与心理社会问题

Adaptive Functioning and Psychosocial Problems in Children with Beta Thalassemia Major.

作者信息

Elzaree Fatma A, Shehata Manal A, El Wakeel Maged A, El-Alameey Inas R, AbuShady Mones M, Helal Suzette I

机构信息

Department of Child Health, National Research Centre, Cairo, Egypt.

Department of Children with Special Needs, Medical Research Division, National Research Centre, Cairo, Egypt.

出版信息

Open Access Maced J Med Sci. 2018 Dec 16;6(12):2337-2341. doi: 10.3889/oamjms.2018.367. eCollection 2018 Dec 20.

Abstract

BACKGROUND

Beta thalassemia major is considered one of the serious health problems and the commonest hemoglobinopathy in Egypt that creates a burden not only on health system but also on the affected families and children who become vulnerable to emotional, social, psychological and behavioural problems.

AIM

This study was designed to assess the psychosocial burden and the adaptive functioning in children with beta-thalassemia major.

SUBJECTS AND METHODS

A group of 50 children with thalassemia major and 50 normal children matched for age and sex were included in a case-control study. Vineland Adaptive Functioning Scale was used to assess the adaptive functions; while the Pediatric Symptom Checklist (PSCL) was used to assess psychosocial morbidity.

RESULTS

A group of 50 children aged 5-17 years old with thalassemia major, their mean age was 11.05 ± 3.8, showed a statistically significant lower total adaptive behaviour score and communication subscale score. All the mean values of adaptive behaviour for cases and controls were within the average values. Results from the PSCL revealed no significant difference between mean scores of children with thalassemia and controls. A score of attention domain was markedly higher in children with thalassemia. Internalising behaviour was the most dominant as it was detected in 10% of the patient group.

CONCLUSION

Thalassemic patients had a relatively mild affection for adaptive and psychosocial functioning that can be explained by social and medical support they receive, which may increase their competence and psychological wellbeing.

摘要

背景

重型β地中海贫血被认为是埃及严重的健康问题之一,也是最常见的血红蛋白病,它不仅给卫生系统带来负担,也给受影响的家庭和儿童带来负担,这些儿童容易出现情绪、社交、心理和行为问题。

目的

本研究旨在评估重型β地中海贫血患儿的心理社会负担和适应功能。

对象与方法

一项病例对照研究纳入了一组50名重型地中海贫血患儿和50名年龄及性别匹配的正常儿童。使用文兰适应功能量表评估适应功能;同时使用儿童症状清单(PSCL)评估心理社会发病率。

结果

一组50名年龄在5至17岁的重型地中海贫血患儿,平均年龄为11.05±3.8岁,其总的适应性行为得分和沟通分量表得分在统计学上显著较低。病例组和对照组的所有适应行为平均值均在平均值范围内。PSCL的结果显示,地中海贫血患儿和对照组的平均得分之间没有显著差异。地中海贫血患儿注意力领域的得分明显更高。内化行为最为突出,在10%的患者组中被检测到。

结论

地中海贫血患者在适应和心理社会功能方面受到的影响相对较轻,这可以通过他们所获得的社会和医疗支持来解释,这些支持可能会提高他们的能力和心理健康水平。

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