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收养对先天性上肢差异患者的功能和心理社会健康的影响。

The Effect of Adoption on Functioning and Psychosocial Well-Being in Patients With Congenital Upper-Extremity Differences.

机构信息

Department of Orthopaedic Surgery, Washington University School of Medicine, Saint Louis, MO.

Department of Orthopaedic Surgery, Washington University School of Medicine, Saint Louis, MO.

出版信息

J Hand Surg Am. 2021 Oct;46(10):856-861. doi: 10.1016/j.jhsa.2021.04.013. Epub 2021 May 24.

DOI:10.1016/j.jhsa.2021.04.013
PMID:34045113
Abstract

PURPOSE

Adoption status has been investigated in numerous populations, identifying negative and positive effects on patient outcomes. This study compared parent-reported outcomes in adopted and nonadopted individuals with congenital upper-extremity (UE) anomalies to determine whether there was a measurable difference in parent perceptions of psychosocial health and functioning.

METHODS

The Congenital Upper Limb Differences registry identified adopted individuals from a large cohort of patients. Each adopted patient was matched to 2 nonadopted patients by sex, age, and diagnosis of UE difference using the Oberg-Manske-Tonkin classification. Parent-reported scores on functional and psychosocial subjective outcomes were compared between the 2 cohorts using the Pediatric Outcome Data Collection Instrument.

RESULTS

Ninety-one adopted pediatric patients with congenital UE differences were identified. Sixty had complete matches for comparison, and the remaining 31 patients were not able to be matched and were excluded from the analysis. Pediatric Outcome Data Collection Instrument scores for the UE function domain were worse in the adopted cohort as judged by minimally clinically important difference. In contrast, scores for Pediatric Outcome Data Collection Instrument domains of transfer and mobility, sports and physical function, pain and comfort, and happiness did not exceed the minimally clinically important difference, although the adopted cohort scores were all relatively lower than the nonadopted cohort scores.

CONCLUSIONS

In pediatric patients with UE differences, adoption status is seen to affect only the parent-reported domain of UE function. While differences by specific congenital diagnosis call for additional investigation, overall, these findings should be reassuring to families planning to adopt children with UE differences, and they should be supported in their expectations of UE functioning.

TYPE OF STUDY/LEVEL OF EVIDENCE: Prognostic III.

摘要

目的

在众多人群中研究了收养状况,确定了其对患者结局的积极和消极影响。本研究比较了先天性上肢(UE)畸形的收养和非收养个体的父母报告结局,以确定在父母对心理社会健康和功能的感知方面是否存在可衡量的差异。

方法

先天性上肢差异登记处从一组大型上肢差异患者中确定了收养者。使用 Oberg-Manske-Tonkin 分类法,通过性别、年龄和 UE 差异的诊断,对每个收养患者与 2 名非收养患者进行匹配。使用儿科结局数据采集工具( Pediatric Outcome Data Collection Instrument )比较两组之间的功能和心理社会主观结局的父母报告评分。

结果

确定了 91 名患有先天性 UE 差异的收养儿科患者。其中 60 名患者具有完整的匹配数据进行比较,其余 31 名患者无法进行匹配,被排除在分析之外。根据最小临床重要差异判断,收养组的上肢功能域儿科结局数据采集工具评分更差。相比之下,上肢转移和活动、运动和身体功能、疼痛和舒适度以及幸福感的儿科结局数据采集工具域评分没有超过最小临床重要差异,尽管收养组的评分均低于非收养组的评分。

结论

在患有 UE 差异的儿科患者中,收养状况仅影响上肢功能的父母报告域。虽然特定先天性诊断的差异需要进一步研究,但总体而言,这些发现应使计划收养 UE 差异儿童的家庭感到放心,并且应支持他们对 UE 功能的期望。

研究类型/证据水平:预后 III 类。

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