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.Methods:
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.Results:
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.Conclusions:
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.