Department of Neurology and Neurosurgery, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, The Netherlands.
Division of Pediatric Neurosurgery, British Columbia Children's Hospital, Vancouver, BC, Canada.
Childs Nerv Syst. 2023 Dec;39(12):3571-3581. doi: 10.1007/s00381-023-06063-3. Epub 2023 Jul 21.
This study provides a systematic review on cosmetic satisfaction and other patient-reported outcomes (PROMs) of patients who underwent surgical treatment of SSC.
A systematic review of all articles published from inception to 1 June 2022 was performed. Articles were included if they reported on subjective assessment of cosmetic satisfaction or other PROMs by patients or their families using questionnaires or interviews.
Twelve articles, describing 724 surgical treatments of SSC, met the inclusion criteria. Cosmetic satisfaction was evaluated in the following ways: 1) use of the VAS score, binary questions or a 5-point scale to rate general, facial or skull appearance; 2) use of an aesthetic outcome staging in which personal opinion was added to the treating surgeon's opinion; and 3) use of an evaluation of anatomical proportions of the skull and face. A trend towards an overall improvement in cosmetic satisfaction following surgical treatment of SSC was observed. Reported PROMs included general health, socioeconomic status, patients' and their families' rating of the normalcy and noticeability of their appearance and how much this bothered them, and patients' answers to the Youth Quality of Life with Facial Differences (YQOL-FD) questionnaire. No clear overall trend of the reported PROMs was identified.
This systematic review illuminates that there is a wide variation in outcomes for evaluating cosmetic satisfaction and other PROMs of patients who underwent surgical treatment of SSC, suggesting that further research is needed to develop an inclusive and uniform approach to assess these outcomes.
本研究对接受 SSC 手术治疗的患者的美容满意度和其他患者报告的结局（PROMs）进行了系统评价。
对从成立到 2022 年 6 月 1 日发表的所有文章进行了系统评价。如果文章使用问卷或访谈报告了患者或其家属对美容满意度或其他 PROMs 的主观评估，则将其纳入。
符合纳入标准的文章共有 12 篇，描述了 724 例 SSC 的手术治疗。美容满意度的评估方法如下：1）使用 VAS 评分、二项式问题或 5 分制来评价总体、面部或颅骨外观；2）使用美学结局分期，其中加入了治疗医生的个人意见；3）使用对颅骨和面部解剖比例的评估。观察到 SSC 手术后美容满意度总体呈改善趋势。报告的 PROMs 包括一般健康状况、社会经济状况、患者及其家属对自身外观正常性和可见性的评价以及他们对外观的困扰程度，以及患者对面部差异青少年生活质量问卷（YQOL-FD）的回答。未确定报告的 PROMs 的明确总体趋势。
本系统评价表明，评估接受 SSC 手术治疗的患者的美容满意度和其他 PROMs 的结果存在很大差异，这表明需要进一步研究以开发一种全面和统一的方法来评估这些结果。
