唇腭裂对父母生活质量的影响：一项试点研究。

The impact of cleft lip and/or palate on parental quality of life: A pilot study.

作者信息

De Cuyper Elise, Dochy Frederick, De Leenheer Els, Van Hoecke Helen

机构信息

Faculty of Medicine and Health Sciences, Ghent University, C. Heymanslaan 10, 9000, Ghent, Belgium.

Department of Otorhinolaryngology, Ghent University Hospital, De Pintelaan 185, 9000, Ghent, Belgium.

出版信息

Int J Pediatr Otorhinolaryngol. 2019 Nov;126:109598. doi: 10.1016/j.ijporl.2019.109598. Epub 2019 Jul 23.

DOI:10.1016/j.ijporl.2019.109598

PMID:31369974

Abstract

BACKGROUND

Cleft lip and/or palate (CL/CP/CLP) is one of the most common congenital anomalies. Children may suffer from a variety of health problems including difficulties with feeding and speech, middle ear problems, hearing loss and associated psychosocial concerns. The extent of impact of this disorder on the parents, however, has not yet been thoroughly evaluated. This pilot study was performed to evaluate the impact of having a child with CL/CP/CLP on the parents' quality of life (QoL) and family functioning and to compare between cleft subgroups.

METHODS

Forty-five parents with children aged 6 months to 6 years with CL/CP/CLP, followed by the multidisciplinary orofacial cleft team of Ghent University Hospital, completed following standardized questionnaires: Impact on Family Scale (IOFS), Family Impact Scale (FIS) and Care-Related Quality of Life Instrument (CarerQoL). Subgroups were compared with diverse unpaired statistical tests.

RESULTS

Younger children (6m-2y) with CL/CP/CLP entail more impact on parental QoL compared to children aged 2-4y old (p=0.04, ε²=0.15/p=0.02, ε²=0.17/p=0.02, ε²=0.17). Families from children with a syndromic cleft also encounter more impact (p=0.04, r=0.32 /p=0.01, r=0.37 /p=0.008, r=0.40/p=0.003, r=0.45). Prenatal orofacial cleft diagnosis is associated with a higher reporting of family conflicts (p=0.04, r=0.32). In case of non-syndromic clefts, families having children with CLP report more family conflicts compared to CL or CP (p=0.02, ε²=0.46). Parental education and number of children within the household showed no significant impact on parental QoL.

CONCLUSION

This cross-sectional study confirms that having a child with CL/CP/CLP impacts the parental QoL. This study was performed as a pilot-study for larger multicentre studies, future development of effective screening tools and identification of subgroups at risk. Long-term multidisciplinary follow-up should involve family-centred support.

摘要

背景

唇裂和/或腭裂（CL/CP/CLP）是最常见的先天性畸形之一。患儿可能会面临各种健康问题，包括喂养和言语困难、中耳问题、听力损失以及相关的心理社会问题。然而，这种疾病对父母的影响程度尚未得到充分评估。本试点研究旨在评估子女患有CL/CP/CLP对父母生活质量（QoL）和家庭功能的影响，并比较不同腭裂亚组之间的差异。

方法

45名子女年龄在6个月至6岁之间且患有CL/CP/CLP的父母，由根特大学医院的多学科口腔颌面裂团队进行随访，他们完成了以下标准化问卷：家庭影响量表（IOFS）、家庭影响量表（FIS）和护理相关生活质量工具（CarerQoL）。通过各种非配对统计检验对亚组进行比较。

结果

与2至4岁的儿童相比，6个月至2岁的CL/CP/CLP幼儿对父母生活质量的影响更大（p = 0.04，ε² = 0.15/p = 0.02，ε² = 0.17/p = 0.02，ε² = 0.17）。患有综合征性腭裂患儿的家庭也受到更大影响（p = 0.04，r = 0.32 /p = 0.01，r = 0.37 /p = 0.008，r = 0.40/p = 0.003，r = 0.45）。产前口腔颌面裂诊断与更高的家庭冲突报告相关（p = 0.04，r = 0.32）。在非综合征性腭裂的情况下，与唇裂或腭裂患儿的家庭相比，患有CLP患儿的家庭报告的家庭冲突更多（p = 0.02，ε² = 0.46）。父母的教育程度和家庭中的子女数量对父母的生活质量没有显著影响。