Tapia Viridiana J, Epstein Sherise, Tolmach Oresta S, Hassan Abdul S, Chung Natalie N, Gosman Amanda A
La Jolla and San Diego, Calif.
From the University of California, San Diego School of Medicine, and the Division of Plastic Surgery, University of California, San Diego Health Center.
Plast Reconstr Surg. 2016 Jul;138(1):175-187. doi: 10.1097/PRS.0000000000002285.
Treatment for patients with diverse craniofacial conditions is complex and long-term. Craniofacial conditions profoundly influence health-related quality of life, and patient- and parent-reported outcomes provide a critical and complementary perspective on the multidisciplinary treatment of patients. However, little is known regarding the health-related quality of life among children with diverse craniofacial conditions. The purpose of this study was to systematically review the literature regarding patient- and parent-reported outcomes measures for patients with diverse craniofacial conditions.
Articles from the PubMed, PsychINFO, CINAHL, Embase/MEDLINE, Scopus, and Web of Science databases that used patient- and/or parent-reported outcome instruments in patients with diverse craniofacial conditions were reviewed. Diagnoses included were cleft lip and/or palate, craniosynostosis, microtia, craniofacial microsomia, facial vascular malformations, and congenital nevi across pediatric populations (0 to 22 years of age).
Six hundred ninety articles were identified, and 155 were selected for inclusion. One hundred twenty different health-related quality-of-life tools were used to analyze factors such as physical, psychological, or social function. Of these, the 10 most common psychometrically tested tools were identified in 59 studies. Five tools had both parent and patient versions. Two tools were developed and validated for patients with diverse craniofacial conditions, but neither was developed for nonadolescent children.
Many parent- and patient-reported instruments are used to measure varying health-related quality of life factors in this population, but no tool exists that was developed and psychometrically tested in different facial deformities that measures comprehensive health-related quality of life issues across all pediatric ages. This study will guide the development of new tools to measure the parent and patient health-related quality-of-life perspective in patients with diverse craniofacial conditions.
患有各种颅面疾病的患者的治疗复杂且长期。颅面疾病对与健康相关的生活质量有深远影响，患者及其家长报告的结果为患者的多学科治疗提供了关键且互补的视角。然而，对于患有各种颅面疾病的儿童的与健康相关的生活质量知之甚少。本研究的目的是系统回顾关于患有各种颅面疾病的患者及其家长报告的结果测量的文献。
对来自PubMed、PsychINFO、CINAHL、Embase/MEDLINE、Scopus和Web of Science数据库的文章进行了综述，这些文章在患有各种颅面疾病的患者中使用了患者和/或家长报告的结局工具。纳入的诊断包括唇裂和/或腭裂、颅缝早闭、小耳畸形、颅面短小畸形、面部血管畸形和小儿人群（0至22岁）的先天性痣。
共识别出690篇文章，其中155篇被选入。使用了120种不同的与健康相关的生活质量工具来分析身体、心理或社会功能等因素。其中，在59项研究中确定了10种最常用的经过心理测量测试的工具。有5种工具同时有家长版和患者版。有两种工具是针对患有各种颅面疾病的患者开发并验证的，但均未针对非青少年儿童开发。
许多家长和患者报告的工具用于测量该人群中不同的与健康相关的生活质量因素，但不存在一种在不同面部畸形中开发并经过心理测量测试的工具，该工具能够测量所有儿童年龄段全面的与健康相关的生活质量问题。本研究将指导开发新的工具，以测量患有各种颅面疾病的患者及其家长与健康相关的生活质量视角。
