Bickham Rebecca S, Waljee Jennifer F, Chung Kevin C, Adkinson Joshua M
Hershey, Pa.; Ann Arbor, Mich.; and Indianapolis, Ind.
From Hershey Medical Center, Penn State University; the Section of Plastic Surgery, University of Michigan Medical School; and the Division of Plastic Surgery, Indiana University School of Medicine.
Plast Reconstr Surg. 2017 Jun;139(6):1422-1429. doi: 10.1097/PRS.0000000000003358.
Patient- and parent-reported outcomes are increasingly considered as measures of treatment effectiveness for congenital conditions. The authors' specific aim was to review the use of patient- and parent-reported outcomes of quality of life, activities of daily living, perception of hand appearance, and satisfaction after reconstruction for congenital hand differences.
The authors reviewed articles addressing congenital hand differences from PubMed, MEDLINE, and EMBASE published between January of 1966 and October of 2016. The authors excluded studies that did not include reconstruction or lacked patient- or parent-reported outcomes. Investigators reviewed 48 studies and extracted the following: study type, level of evidence, type of congenital hand differences, sample size, procedure performed, length of follow-up, and domains and results of patient-satisfaction questionnaires.
Multiple studies across several types of congenital hand differences showed that a majority of patients and parents report improvements and are satisfied with postoperative outcomes. However, there were several patient cohorts (e.g., thumb duplication, thumb hypoplasia, radial longitudinal deficiency) who expressed dissatisfaction with outcomes and continue to experience decreased health-related quality of life.
Overall, patient satisfaction and reports of health-related quality of life among children with congenital hand differences are favorable. Patients seem to cope and adapt well, but teasing and social relationships remain problematic, particularly as children enter school. This article highlights addressing these concerns before embarking on reconstruction.
患者及家长报告的结果越来越被视为先天性疾病治疗效果的衡量指标。作者的具体目的是回顾患者及家长报告的关于先天性手部差异患者的生活质量、日常生活活动、对手部外观的认知以及重建术后满意度等方面的结果。
作者回顾了1966年1月至2016年10月期间在PubMed、MEDLINE和EMBASE上发表的关于先天性手部差异的文章。作者排除了未包括重建内容或缺乏患者及家长报告结果的研究。研究人员回顾了48项研究，并提取了以下信息：研究类型、证据水平、先天性手部差异类型、样本量、实施的手术、随访时间以及患者满意度问卷的领域和结果。
多项针对多种类型先天性手部差异的研究表明，大多数患者和家长报告术后情况有所改善，并对术后结果感到满意。然而，有几个患者群体（如拇指重复畸形、拇指发育不全、桡侧纵列发育不全）对结果表示不满，且健康相关生活质量持续下降。
总体而言，先天性手部差异患儿的患者满意度及健康相关生活质量报告情况良好。患者似乎能够很好地应对和适应，但被取笑和社交关系仍然存在问题，尤其是在孩子入学时。本文强调在进行重建手术之前解决这些问题。
