Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study
Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study
复制标题
DOI：
10.1002/pbc.25503
复制
发表时间：
2015-07-01
影响因子：
3.2
通讯作者：
Akanmu, Alani S.
中科院分区：
文献类型：
--
作者：
Adeyemo, Titilope A.;Ojewunmi, Oyesola O.;Akanmu, Alani S.
镰状细胞病影响患者生活的身体、情感和心理方面，往往使他们受到社会与疾病相关的污名，并改变与健康有关的生活质量（HRQoL）。本研究比较了青少年镰状细胞病患者与健康同龄人的HRQoL，确定了影响HRQoL的社会人口统计学和临床因素，并确定了SCD相关污名对生活质量的程度和影响。我们对160名青少年进行了横断面调查，其中80名有SCD， 80名无SCD。使用预先测试的问卷收集社会人口统计学和临床数据。HRQoL采用SF-36v2健康调查表进行调查。SCD感知耻感是用一种适应的感知耻感问卷来测量的。结果SCD青少年HRQoL除心理健康外，在躯体功能、躯体角色限制、情感角色限制、社会功能、躯体疼痛、活力和一般健康感知等重要维度均显著低于同龄人。近期住院和SCD相关并发症进一步降低了HRQoL评分。超过70%的SCD青少年有中度到高度的污名感。住院、SCD并发症、SCD耻辱感与HRQoL呈负相关且显著相关。结论尼日利亚患有SCD的青少年与健康同龄人相比，健康相关的生活质量较低。她们还经历了影响她们HRQoL的耻辱。SCD的并发症和住院是造成这种损伤的重要原因。儿科血癌2015；62:1245-1251。(c) 2015 Wiley期刊公司
BackgroundSickle cell disease impacts the physical, emotional and psychological aspects of life of the affected persons, often times exposing them to disease associated stigma from the society and alters the health related quality of life (HRQoL). This study compared the HRQoL of adolescents with sickle cell disease with their healthy peers, identified socio-demographic and clinical factors impacting HRQoL, and determined the extent and effects of SCD related stigma on quality of life.ProcedureWe conducted a cross-sectional survey among 160 adolescents, 80 with SCD and 80 adolescents without SCD. Socio-demographic and clinical data were collected using a pre-tested questionnaire. HRQoL was investigated using the Short Form (SF-36v2) Health Survey. SCD perceived stigma was measured using an adaptation of a perceived stigma questionnaire.ResultsAdolescents with SCD have significantly worse HRQoL than their peers in all of the most important dimensions of HRQoL (physical functioning, physical roles limitation, emotional roles limitation, social functioning, bodily pain, vitality and general health perception) except mental health. Recent hospital admission and SCD related complication further lowered HRQoL scores. Over seventy percent of adolescents with SCD have moderate to high level of perception of stigmatisation. Hospitalisation, SCD complication, SCD stigma were inversely, and significantly associated with HRQoL.ConclusionsAdolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment. Pediatr Blood Cancer 2015;62:1245-1251. (c) 2015 Wiley Periodicals, Inc.