Demirkaya Erkan, Consolaro Alessandro, Sonmez Hafize Emine, Giancane Gabriella, Simsek Dogan, Ravelli Angelo
Gulhane Military Medical Faculty, Pediatric Rheumatology Unit, FMF Arthritis Vasculitis and Orphan Disease Research in Pediatric Rheumatology (FAVOR), 06018, Etlik, Ankara, Turkey.
Università degli Studi di Genova and Istituto Giannina Gaslini, via G. Gaslini 5, 16147, Genoa, Italy.
Curr Rheumatol Rep. 2016 Feb;18(2):8. doi: 10.1007/s11926-015-0558-4.
A rational management of children and adolescents with rheumatic and autoinflammatory diseases requires the regular assessment of the level of disease activity and of child health and well-being through the use of well-validated outcome measures. Ideally, such instruments should be simple and feasible and easily applicable in standard clinical practice. In recent years, a number of novel outcome measures have been developed and validated for use in pediatric patients with rheumatic and autoinflammatory illnesses. Furthermore, there has been an increased focus on the appraisal of child and parent perception of the disease impact. The new tools have markedly enlarged the spectrum of disorders and health domains that can be assessed in a standardized way. This progress will help to enhance the reliability of research studies and clinical trials. The aim of the present review is to provide an update of the recent advances in this field of research.
对患有风湿性和自身炎症性疾病的儿童和青少年进行合理管理，需要通过使用经过充分验证的结局指标，定期评估疾病活动水平以及儿童的健康和幸福感。理想情况下，此类工具应简单可行，易于在标准临床实践中应用。近年来，已开发并验证了一些新的结局指标，用于患有风湿性和自身炎症性疾病的儿科患者。此外，人们越来越关注对儿童及其父母对疾病影响的认知的评估。这些新工具显著扩大了可以以标准化方式评估的疾病和健康领域的范围。这一进展将有助于提高研究和临床试验的可靠性。本综述的目的是提供该研究领域最新进展的最新情况。
