Saha Rajib, Misra Raghunath, Saha Indranil
Department of Community Medicine, Bankura Sammilani Medical College and Hospital, Bankura, West Bengal, India.
, AD-234, Rabindrapally, Krishnapur, Kolkata, 700101, West Bengal, India.
Indian J Pediatr. 2015 Oct;82(10):909-16. doi: 10.1007/s12098-014-1670-6. Epub 2015 Feb 26.
To assess the quality of life among thalassemic children and to find out association of quality of life (QOL) with the socio-demographic factors, and clinico-therapeutic profile.
This cross sectional descriptive epidemiological study was conducted from July 2011 through June 2012 on 365 admitted thalassemic patients of 5 to 12 y of age in the Burdwan Medical College and Hospital. Parents of the children were interviewed using Paediatric Quality of Life Inventory 4.0 Generic Core Scale. Statistically significant variables in bivariate analysis were considered for correlation matrix where independent variables were found inter related. So, partial correlation was done and statistically significant variables in partial correlation were considered for linear regression.
The mean age of 365 thalassemic children was 8.3 ± 2.4 y. Multiple linear regressions predicted that only 70.5 % variation of total summary score depended on duration since splenectomy (31.2 % variation), last pre transfusion Hb level (20.7 %), family history of thalassemia (17.3 %) and frequency of blood transfusions (1.3 %). After splenectomy, thalassemic children could lead a better quality of life upto 5 y only. The betterment of the quality of life needs maintaining pre transfusion Hb level above 7 g/dl. Previous experience of the disease among the family members enriches the awareness among them and helps them to take correct decisions timely about the child and that leads to better QOL.
More awareness regarding the maintenance of pre transfusion Hb level should be built up among parents and families where such disease has occurred for the first time.
评估地中海贫血患儿的生活质量，并找出生活质量（QOL）与社会人口学因素以及临床治疗情况之间的关联。
这项横断面描述性流行病学研究于2011年7月至2012年6月在布尔万医学院和医院对365名5至12岁的住院地中海贫血患者进行。使用儿童生活质量量表4.0通用核心量表对患儿家长进行访谈。在双变量分析中具有统计学意义的变量被纳入相关矩阵，发现自变量之间相互关联。因此，进行了偏相关分析，并将偏相关分析中具有统计学意义的变量纳入线性回归分析。
365名地中海贫血患儿的平均年龄为8.3±2.4岁。多元线性回归预测，总综合评分中只有70.5%的变异取决于脾切除术后的时长（变异率为31.2%）、末次输血前血红蛋白水平（20.7%）、地中海贫血家族史（17.3%）和输血频率（1.3%）。脾切除术后，地中海贫血患儿仅在5年内能过上质量较好的生活。生活质量的改善需要将输血前血红蛋白水平维持在7 g/dl以上。家庭成员之前的患病经历增强了他们的认知，并帮助他们及时就孩子的情况做出正确决策，从而带来更好的生活质量。
对于首次出现此类疾病的家庭，应提高家长对维持输血前血红蛋白水平的认识。
