Stade Brenda C, Stevens Bonnie, Ungar Wendy J, Beyene Joseph, Koren Gideon
Department of Paediatrics, St, Michael's Hospital, Toronto, Canada.
Health Qual Life Outcomes. 2006 Oct 13;4:81. doi: 10.1186/1477-7525-4-81.
In Canada, the incidence of Fetal Alcohol Spectrum Disorder (FASD) has been estimated to be 1 in 100 live births. Caused by prenatal exposure to alcohol, FASD is the leading cause of neuro-developmental disabilities among Canadian children, and youth.
To measure the health-related quality of life (HRQL) of Canadian children and youth diagnosed with FASD.
A prospective cross-sectional study design was used. One-hundred and twenty-six (126) children and youth diagnosed with FASD, aged 8 to 21 years, living in urban and rural communities throughout Canada participated in the study. Participants completed the Health Utilities Index Mark 3 (HUI3). HUI3 measures eight health attributes: vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain. Utilities were used to measure a single cardinal value between 0 and 1.0 (0 = all-worst health state; 1 = perfect health) to reflect the global HRQL for that child. Mean HRQL scores and range of scores of children and youth with FASD were calculated. A one-sample t-test was used to compare mean HRQL scores of children and youth with FASD to those from the Canadian population.
Mean HRQL score of children and youth with FASD was 0.47 (95% CI: 0.42 to 0.52) as compared to a mean score of 0.93 (95% CI: 0.92 to 0.94) in those from the general Canadian population (p < 0.001). Children demonstrated moderate to severe dysfunction on the single-attributes of cognition and emotion.
Children and youth with FASD have significantly lower HRQL than children and youth from the general Canadian population. This finding has significant implications for practice, policy development, and research.
在加拿大,胎儿酒精谱系障碍(FASD)的发病率估计为每100例活产中有1例。FASD由产前酒精暴露引起,是加拿大儿童和青少年神经发育残疾的主要原因。
测量加拿大被诊断为FASD的儿童和青少年的健康相关生活质量(HRQL)。
采用前瞻性横断面研究设计。126名年龄在8至21岁、被诊断为FASD的儿童和青少年参与了该研究,他们生活在加拿大城乡社区。参与者完成了健康效用指数Mark 3(HUI3)。HUI3测量八个健康属性:视力、听力、言语、行走、灵巧性、情绪、认知和疼痛。效用用于测量0至1.0之间的单个基数价值(0 = 最差健康状态;1 = 完美健康),以反映该儿童的整体HRQL。计算了患有FASD的儿童和青少年的平均HRQL得分及得分范围。采用单样本t检验将患有FASD的儿童和青少年的平均HRQL得分与加拿大人群的得分进行比较。
患有FASD的儿童和青少年的平均HRQL得分为0.47(95%可信区间:0.42至0.52),而加拿大普通人群的平均得分为0.93(95%可信区间:0.92至0.94)(p < 0.001)。儿童在认知和情绪的单一属性上表现出中度至重度功能障碍。
患有FASD的儿童和青少年的HRQL显著低于加拿大普通人群中的儿童和青少年。这一发现对实践、政策制定和研究具有重要意义。