Hospital Central de Maputo, Maputo, Mozambique.
University of California Los Angeles, David Geffen School of Medicine, California Los Angeles, USA.
Pan Afr Med J. 2020 Aug 25;36:343. doi: 10.11604/pamj.2020.36.343.24837. eCollection 2020.
sickle cell disease (SCD) has significant pediatric morbidity and mortality in sub-Saharan Africa, where access to therapies such as hydroxyurea and opioids is often limited. Poor disease control and Pain management adversely affects the well-being and mental health of affected children. Questionnaires have been utilized in other regions to report the quality of life (QOL) in children with SCD, but assessments from Africa are lacking.
children age 2-14 years with SCD presenting for routine outpatient consultations at Hospital Central de Maputo from June-August 2017 were offered participation. After informed consent, the Pediatric QOL Inventory (PedsQL) SCD Module was administered to all caregivers and children > 5 years. Responses were scored from 0-100, with higher scores representing better QOL.
a total of 14 children were included, with six (43%), four (29%), two (14%), and two (14%) from the age groups of 2-4, 5-7, 8-12, and 13-14 years, respectively. Mean overall patient QOL was 65.3 and 56.0 in child and caregiver respondents. In patients > 5 years, the difference in mean overall QOL for those on/not on hydroxyurea was 0.6 (66.5-64.9) in child respondents and 15.8 (68.4-52.6) in caregiver respondents. Domains related to worry/emotions and communication scored lower in QOL than Pain-related domains for both patient and caregiver respondents.
SCD has a negative impact on QOL as reported by this cohort of Mozambican pediatric patients and caregivers, with Pain being less of a concern than emotional and interpersonal issues. A comprehensive, child-focused care approach with robust psychosocial support is needed.
在撒哈拉以南非洲地区，镰状细胞病（SCD）有显著的儿科发病率和死亡率，而羟基脲和阿片类药物等治疗方法的获得往往受到限制。疾病控制不良和疼痛管理不善会对受影响儿童的福祉和心理健康产生不利影响。在其他地区，已经使用问卷来报告 SCD 患儿的生活质量（QOL），但非洲缺乏评估。
2017 年 6 月至 8 月，在马普托中央医院接受常规门诊咨询的 2-14 岁 SCD 患儿受邀参与研究。在获得知情同意后，向所有照顾者和 5 岁以上的儿童发放儿科生活质量量表（PedsQL）SCD 模块。评分从 0-100，得分越高表示 QOL 越好。
共纳入 14 名儿童，年龄分别为 2-4 岁、5-7 岁、8-12 岁和 13-14 岁的各占 43%、29%、14%和 14%。总体患儿 QOL 的平均得分是 65.3，照顾者的平均得分是 56.0。在 5 岁以上的患儿中，接受/未接受羟基脲治疗的患儿的总体 QOL 差异为 0.6（66.5-64.9），照顾者的差异为 15.8（68.4-52.6）。对于患儿和照顾者来说，与疼痛相关的领域相比，担心/情绪和沟通相关的领域在 QOL 中得分较低。
莫桑比克儿科患者和照顾者报告 SCD 对 QOL 有负面影响，疼痛的关注度低于情绪和人际问题。需要采取全面的、以儿童为中心的护理方法，并提供强大的社会心理支持。
