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国际收养唇腭裂儿童的长期患者报告结局。

Long-Term Patient-Reported Outcomes in Internationally Adopted Children with Cleft Lip and Palate.

机构信息

Division of Plastic, Reconstructive, and Oral Surgery, Children's Hospital of Philadelphia, Philadelphia, PA, USA.

出版信息

Cleft Palate Craniofac J. 2025 Jan;62(1):44-50. doi: 10.1177/10556656231198647. Epub 2023 Aug 30.

DOI:10.1177/10556656231198647
PMID:37649261
Abstract

OBJECTIVE

To compare patient-reported outcomes (PROs) in internationally adopted patients with cleft lip and palate to those in non-adopted peers.

DESIGN

Cross-sectional study.

SETTING

Multidisciplinary cleft team at tertiary care hospital.

PATIENTS

Patients aged ≥ 8 with cleft lip and palate attending routine cleft team evaluations September 2021 - September 2022.

MAIN OUTCOME MEASURE

CLEFT-Q PRO scores.

RESULTS

Sixty-four internationally adopted patients and 113 non-adopted patients with a mean age of 13 years were included. Compared to non-adopted peers, adopted patients demonstrated worse satisfaction with face appearance (mean 59 vs. 66, = .044), speech function (mean 69 vs. 78, = .005), and speech distress (mean 80 vs. 84, = .032). No significant differences were observed on the nose, nostrils, teeth, lips, lip scar, jaws, psychological function, or social function scales (> .05). Objective clinical evaluation corroborated these findings, with adopted patients demonstrating worse Pittsburgh Weighted Speech scores (mean 3.0 vs 1.9, = .027) and greater incidence of articulation errors (64% vs 46%, = .021). No significant differences were observed in rates of mood, anxiety, or behavior concerns identified on psychosocial assessment ( = .764). Among adopted patients, undergoing palatoplasty prior to adoption was associated with worse satisfaction with speech, appearance, school, and social function (< .05).

CONCLUSIONS

Patient-reported outcomes among internationally adopted adolescents and young adults with cleft lip and palate show slightly lower satisfaction with facial appearance and speech but otherwise demonstrate similar results to non-adopted peers on most appearance and psychosocial measures. PRO data correlated well with objective speech assessment and did not portend worse psychosocial function.

摘要

目的

比较国际收养唇腭裂患者与非收养同龄人患者报告的结局(PROs)。

设计

横断面研究。

设置

三级保健医院多学科腭裂团队。

患者

2021 年 9 月至 2022 年 9 月期间,年龄≥8 岁、接受常规腭裂团队评估的唇腭裂患者。

主要观察指标

CLEFT-Q PRO 评分。

结果

纳入 64 名国际收养患者和 113 名非收养患者,平均年龄为 13 岁。与非收养同龄人相比,收养患者的面部外观满意度(平均 59 分 vs. 66 分,=0.044)、言语功能(平均 69 分 vs. 78 分,=0.005)和言语困扰(平均 80 分 vs. 84 分,=0.032)较差。在鼻子、鼻孔、牙齿、嘴唇、唇瘢痕、颌骨、心理功能或社会功能量表上未观察到显著差异(>0.05)。客观临床评估证实了这些发现,收养患者的匹兹堡语音重量评分(平均 3.0 分 vs. 1.9 分,=0.027)更差,构音错误发生率更高(64% vs. 46%,=0.021)。在社会心理评估中,情绪、焦虑或行为问题的发生率无显著差异(=0.764)。在收养患者中,在收养前接受腭裂手术与言语、外貌、学校和社会功能满意度较差相关(<0.05)。

结论

国际收养的唇腭裂青少年和年轻成人患者的患者报告结局显示,他们对面部外观和言语的满意度略低,但在大多数外观和社会心理测量上与非收养同龄人相比结果相似。PRO 数据与客观言语评估相关性良好,且不会导致更差的社会心理功能。

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