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本文引用的文献

1
Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium.镰状细胞病患者报告的结局及其与临床和社会心理因素的关联:镰状细胞病实施联合会报告。
Am J Hematol. 2020 Sep;95(9):1066-1074. doi: 10.1002/ajh.25880. Epub 2020 Jun 29.
2
Prevalence of depression among adults with sickle cell disease in the southern region of Saudi Arabia.沙特阿拉伯南部地区镰状细胞病成年患者中的抑郁症患病率。
Pak J Med Sci. 2018 Jul-Aug;34(4):929-933. doi: 10.12669/pjms.344.14760.
3
Depression, Anxiety, and Quality of Life In Children and Adolescents With Sickle Cell Disease.镰状细胞病患儿及青少年的抑郁、焦虑与生活质量
Pediatr Nurs. 2016 May-Jun;42(3):113-9, 144.
4
Health-related quality of life in patients with sickle cell disease in Saudi Arabia.沙特阿拉伯镰状细胞病患者的健康相关生活质量
Health Qual Life Outcomes. 2015 Nov 16;13:183. doi: 10.1186/s12955-015-0380-8.
5
Depression and quality of life in children with sickle cell disease: the effect of social support.镰状细胞病患儿的抑郁与生活质量:社会支持的影响
BMC Psychiatry. 2015 Apr 11;15:78. doi: 10.1186/s12888-015-0461-6.
6
Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study.尼日利亚镰状细胞病青少年的健康相关生活质量和污名感知:一项横断面研究。
Pediatr Blood Cancer. 2015 Jul;62(7):1245-51. doi: 10.1002/pbc.25503. Epub 2015 Mar 25.
7
Health-related quality of life in children with sickle cell anemia: impact of blood transfusion therapy.儿童镰状细胞贫血患者的健康相关生活质量:输血治疗的影响。
Am J Hematol. 2015 Feb;90(2):139-43. doi: 10.1002/ajh.23877.
8
Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy, and health care professional-proxy reports.采用自我报告、父母代理报告和医疗保健专业人员代理报告评估镰状细胞贫血儿童的生活质量。
Br J Health Psychol. 2015 May;20(2):290-304. doi: 10.1111/bjhp.12099. Epub 2014 Apr 23.
9
Health related quality of life among adolescents with sickle cell disease in Saudi Arabia.沙特阿拉伯镰状细胞病青少年的健康相关生活质量
Pan Afr Med J. 2011;8:10. doi: 10.4314/pamj.v8i1.71057. Epub 2011 Feb 15.
10
Development of the PedsQL™ Sickle Cell Disease Module items: qualitative methods.儿童生活质量量表镰状细胞病模块项目的制定:定性方法。
Qual Life Res. 2012 Mar;21(2):341-57. doi: 10.1007/s11136-011-9941-4. Epub 2011 Jun 3.

埃及儿童和青少年镰状细胞病患者生活质量模块评估:精神疾病和疾病特定变量的影响

Evaluation of Sickle Cell Module for Quality of Life in Egyptian Children and Adolescents Patients: Impact of Psychiatric and Disease Specific Variables.

作者信息

Ragab Iman Ahmed, Ellabody Mohamed Abdel-Mohsen, Ramy Hisham Ahmed, Mahmoud Naglaa Fathy, Sayed Safa Matbouly

机构信息

Paediatric Department, Hematology-Oncology Unit, Faculty of Medicine, Ain Shams University, Cairo, Egypt.

Neuropsychiatry Department, Faculty of Medicine, Ain Shams University, Cairo, Egypt.

出版信息

Indian J Hematol Blood Transfus. 2021 Oct;37(4):616-622. doi: 10.1007/s12288-021-01396-y. Epub 2021 Feb 8.

DOI:10.1007/s12288-021-01396-y
PMID:34690455
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8523600/
Abstract

Sickle cell disease (SCD) impacts the physical, emotional, and psychological aspects of life. We aimed to study the quality of life (QoL) in Egyptian children and adolescents with SCD using the sickle cell module in relations to social, psychological and disease variables. A cross sectional study included 40 patients with SCD between 5 and 18 years. Details of diagnosis, SCD related complications, socioeconomic status were revised. Psychological assessment was done using children depression inventory, revised Children's Manifest anxiety scale and Health related QoL for both patients and parents using a validated Arabic age specific version of sickle cell module. Significant better scores for communication problems in mothers with college degree was found compared with other academic levels with no significant difference in QoL in relation to father education and significant higher communication problems with high rate of hospitalization ( = .021). Pain score was higher in 8-13 years compared with 13-18 years age groups. Significant worse scores for worrying was found in females,  = 0.033; Depression was found in 90% of studied patients. The main determinants of QoL in patients with SCD were maternal education and frequency of hospitalization. Depression is of alarming frequency for intervention.

摘要

镰状细胞病(SCD)会影响生活的身体、情感和心理方面。我们旨在使用镰状细胞模块,研究埃及患有SCD的儿童和青少年的生活质量(QoL)与社会、心理和疾病变量之间的关系。一项横断面研究纳入了40名年龄在5至18岁之间的SCD患者。对诊断细节、SCD相关并发症、社会经济状况进行了修订。使用儿童抑郁量表、修订后的儿童显性焦虑量表对患者进行心理评估,并使用经过验证的阿拉伯语特定年龄版本的镰状细胞模块对患者及其父母进行与健康相关的生活质量评估。与其他学历水平相比,发现大学学历母亲的沟通问题得分显著更高,父亲教育程度与生活质量无显著差异,住院率高时沟通问题显著更多(P = 0.021)。8至13岁年龄组的疼痛得分高于13至18岁年龄组。女性的担忧得分显著更差(P = 0.033);90%的研究患者存在抑郁。SCD患者生活质量的主要决定因素是母亲的教育程度和住院频率。抑郁的发生率令人担忧,需要进行干预。