Haj M, de Gier H H W, van Veen-van der Hoek M, Versnel S L, van Adrichem L N, Wolvius E B, Hazelzet J A, Koudstaal M J
Ned Tijdschr Tandheelkd. 2018 Feb;125(2):70-75. doi: 10.5177/ntvt.2018.02.17135.
The quality of care for patients with cleft lip and palate is extremely variable across the world. Treatment protocols differ and methods of data registration are not uniform. Improving this care by means of comparative research is challenging. The best treatment programmes can be identified by uniformly registering patient-orientated outcomes and comparing the outcomes with those of other treatment centres. That knowledge can be used to improve one's own care. An international team consisting of specialists and cleft lip and palate patients has developed a set of outcome measures that are considered by patients to be most important. This team is coordinated by the International Consortium of Health Outcomes Measurement (ICHOM). The cleft lip and palate outcome set can be used by all centres worldwide in following up on cleft lip and palate patients. In the Erasmus Medical Centre in Rotterdam, the 'Zorgmonitor Schisis' (Care Monitor Cleft Lip and Palate) has been built, an application in which these outcome measures are collected at fixed times. Implementing this set of outcome measures in other cleft lip and palate treatment centres and using the outcomes as (inter)national benchmarks will result in transparency and the improvement of the treatment of cleft lip and palate worldwide.
世界各地唇腭裂患者的护理质量差异极大。治疗方案各不相同，数据登记方法也不统一。通过比较研究来改善这种护理具有挑战性。通过统一记录以患者为导向的结果，并将结果与其他治疗中心的结果进行比较，可以确定最佳治疗方案。这些知识可用于改善自身的护理。一个由专家和唇腭裂患者组成的国际团队制定了一套患者认为最重要的结果指标。该团队由国际健康结果测量协会（ICHOM）协调。全球所有中心都可以使用唇腭裂结果指标集来跟踪唇腭裂患者。在鹿特丹的伊拉斯姆斯医学中心，构建了“Zorgmonitor Schisis”（唇腭裂护理监测器），这是一个在固定时间收集这些结果指标的应用程序。在其他唇腭裂治疗中心实施这套结果指标，并将结果用作（国际）基准，将提高透明度，改善全球唇腭裂的治疗。
