Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA.
Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina, USA.
J Eur Acad Dermatol Venereol. 2023 Jul;37(7):1406-1414. doi: 10.1111/jdv.19059. Epub 2023 Apr 12.
The Localized Scleroderma Quality of Life Instrument (LoSQI) is a disease-specific patient-reported outcome (PRO) measure designed for children and adolescents with localized scleroderma (LS; morphea). This tool was developed using rigorous PRO methods and previously cognitively tested in a sample of paediatric patients with LS.
The purpose of this study was to evaluate the psychometric properties of the LoSQI in a clinical setting.
Cross-sectional data from four specialized clinics in the US and Canada were included in the analysis. Evaluation included reliability of scores, internal structure of the survey, evidence of convergent and divergent validity, and test-retest reliability.
One hundred and ten patients with LS (age: 8-20 years) completed the LoSQI. Both exploratory and confirmatory factor analysis supported the use of two sub-scores: Pain and Physical Functioning, and Body Image and Social Support. Correlations with other PRO measures were consistent with pre-specified hypotheses.
This study did not evaluate longitudinal validity or responsiveness of scores.
Results from a representative sample of children and adolescents with LS continue to support the validity of the LoSQI when used in a clinical setting. Future work to evaluate the responsiveness is ongoing.
局限性硬皮病生活质量量表（LoSQI）是一种针对局限性硬皮病（LS；硬斑病）儿童和青少年的疾病特异性患者报告结局（PRO）测量工具。该工具是使用严格的 PRO 方法开发的，并在 LS 患儿样本中进行了先前的认知测试。
本研究旨在临床环境中评估 LoSQI 的心理测量特性。
分析纳入了来自美国和加拿大四个专业诊所的横断面数据。评估包括分数的可靠性、调查的内部结构、收敛和发散有效性的证据以及测试-重测可靠性。
110 名 LS 患者（年龄：8-20 岁）完成了 LoSQI。探索性和验证性因子分析均支持使用两个子量表：疼痛和身体机能，以及身体形象和社会支持。与其他 PRO 测量的相关性与预先指定的假设一致。
本研究未评估评分的纵向有效性或反应性。
来自 LS 儿童和青少年代表性样本的结果继续支持在临床环境中使用 LoSQI 的有效性。正在进行评估评分反应性的未来工作。
