Health Related Quality of Life among Children with Sickle Cell Anaemia in Northwestern Tanzania.
Health Related Quality of Life among Children with Sickle Cell Anaemia in Northwestern Tanzania.
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DOI：
10.4236/ojbd.2022.122002
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发表时间：
2022-06
期刊：
影响因子：
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通讯作者：
Hokororo A
中科院分区：
文献类型：
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作者：
Mwazyunga Z;Ambrose EE;Kayange N;Bakalemwa R;Kidenya B;Smart LR;Hokororo A
镰状细胞性贫血(SCA)是一种严重的、多系统的遗传性疾病，影响着全球数百万儿童。这种疾病导致许多并发症，干扰了这些儿童与健康有关的生活质量，包括对教育、身体和心理社会发展的影响。很少有研究描述生活在低资源地区的SCA儿童的临床谱系和生活质量。这项研究旨在确定坦桑尼亚西北部镰状细胞性贫血(SCA)儿童的临床谱系和HRQL。这项以医院为基础的横断面研究在坦桑尼亚Mwanza Bugando医疗中心的第三和教学医院进行。这项研究招募了2-12岁患有SCA的儿童到Bugando医疗中心的镰状细胞诊所就诊。在将英语翻译成斯瓦希里语版本后，使用儿科生活质量简明通用核心量表来衡量与健康相关的生活质量。使用结构化问卷对重要的SCA并发症进行评估。2016年10月至2017年3月，招收204名幼儿。参与者的平均年龄为6岁[IQR 4-9]。在SCA患儿中，入选时最常见的临床体征为面色苍白69.6%(142/204)，黄疸65.9%(134/204)，血氧饱和度及血氧饱和度90%(51/204)，脾肿大19%(39/204)。重度贫血率为30.9%(63/204)。大多数人报告血管闭塞危象(166/204，81.4%)，极少数人(5/204，2.5%)有过中风经历。采用改良的李克特量表，共有41/204(20.1%)的儿童在PedsQL™上表现为低分，而163/204(79.9%)的儿童得分较高，表明他们的生活质量较好。在多因素分析中，年龄≥5岁(p值0.001)、血红蛋白7 g/dl(p值=0.001)和每年住院3次(p值=0.008)与较差的生存质量相关。SCA并发症，对患有该病的儿童的HRQOL产生负面影响。严重贫血、高龄和频繁住院与较差的HRQOL密切相关。需要从诊断开始就进行全面管理，以便及早发现这些儿童，并为他们提供足够的支持。
Sickle cell anaemia (SCA) is a serious, multisystem, genetic disorder affecting millions of children worldwide. The disease causes numerous complications that interfere with the health-related quality of life (HRQoL) of these children including an impact on educational, physical and psychosocial development. Few studies have described the clinical spectrum and quality of life of children with SCA living in a low-resource area. This study aimed to determine the clinical spectrum and HRQoL among children living with sickle cell anaemia (SCA) in northwest Tanzania. This hospital-based cross-sectional study took place at Tertiary and teaching hospital, Bugando Medical Centre, Mwanza Tanzania. The study enrolled children ages 2 – 12 years old with SCA attending the Bugando Medical Centre sickle cell clinic. Health related quality of life was measured using the Pediatric Quality of Life, Brief Generic Core Scale after translating from English into a Swahili version. Important SCA complications were assessed using a structured questionnaire. From October 2016 to March 2017, 204 children were enrolled. Participants presented at a median age of 6 years [IQR 4 – 9]. Among children with SCA the most common clinical signs at the time of enrolment were pale in 69.6% (142/204), jaundice in 65.9% (134/204), oxygen saturation < 90% in 25% (51/204) and splenomegaly in 19% (39/204). Severe anaemia was observed in 30.9% (63/204). A majority reported vaso-occlusive crisis (166/204, 81.4%), and very few had experienced a prior stroke (5/204, 2.5%). Using a modified Likert scale, a total of 41/204 (20.1%) children had poor HRQoL indicated by low scores on PedsQL™ and 163/204 (79.9%) children had high scores, indicating good HRQoL. On multivariate analysis, age ≥ 5 years (p-value < 0.001), haemoglobin < 7 g/dl (p-value = 0.001) and >3 hospitalizations per year (p-value = 0.008) were associated with poor HRQoL. SCA complications, negatively impact the HRQoL of children living with the disease. Severe anaemia, older age and frequent hospitalizations were highly associated with poor HRQoL. Comprehensive management is needed beginning at diagnosis to identify these children early and provide them with adequate support.