Kramer F-J, Baethge C, Sinikovic B, Schliephake H
Department of Oral and Maxillofacial Surgery, George-August-University of Goettingen, Goettingen, Germany.
Int J Oral Maxillofac Surg. 2007 Dec;36(12):1146-52. doi: 10.1016/j.ijom.2007.06.009. Epub 2007 Sep 5.
Most parents are emotionally traumatized when confronted by the birth of a baby with an orofacial cleft (OFC). Affected families may have to compensate for increased financial, social and personal impacts before primary treatment is completed. This study was conducted to identify factors influencing the quality of life (QoL) of families having young children with OFC. A self-administered questionnaire containing the impact on family scale was applied in 130 consecutive families having children with OFC aged between 6 and 24 months. The results were related to the type of cleft and the time of initial diagnosis using non-parametric tests and multivariate correlation analysis (P<0.05). In families having children with isolated cleft lip, financial and social impacts were reduced, but problems in coping were increased when compared to families with children having cleft lip and palate or isolated cleft palate. Total impact was highest in families having children with isolated cleft palate, probably due to later surgery for reconstruction. Prenatal diagnosis of OFC did not reduce the general impact on affected families, but increased the social impact. The relation of certain impacts to distinct types of cleft might allow more tailored support of affected families and improve their QoL.
当面对患有口面部裂隙（OFC）的婴儿出生时，大多数父母都会受到情感创伤。在完成初步治疗之前，受影响的家庭可能不得不应对增加的经济、社会和个人影响。本研究旨在确定影响有年幼OFC患儿家庭生活质量（QoL）的因素。对130个连续的有6至24个月大OFC患儿的家庭应用了一份包含家庭影响量表的自填问卷。使用非参数检验和多变量相关分析（P<0.05）将结果与裂隙类型和初始诊断时间相关联。在有孤立性唇裂患儿的家庭中，与有唇腭裂或孤立性腭裂患儿的家庭相比，经济和社会影响有所降低，但应对问题有所增加。在有孤立性腭裂患儿的家庭中，总体影响最高，这可能是由于重建手术较晚。OFC的产前诊断并没有减少对受影响家庭的总体影响，但增加了社会影响。某些影响与不同类型裂隙的关系可能使对受影响家庭的支持更加有针对性，并改善他们的生活质量。
