Supplementary Material for: Patient-Reported Outcome Measures for Pediatric Psoriasis: A Systematic Review and Critical Appraisal from International Dermatology Outcome Measures (IDEOM)

Childhood onset psoriasis has a profound impact on the development and quality of life of pediatric patients. Consequently, validated patient-reported outcome measures (PROMs) for pediatric psoriasis are vital to patient care. We sought to critically appraise the literature on the measurement properties of PROMs used in the pediatric psoriasis population. We performed a 2-stage systematic literature synthesis in MEDLINE (1950–2017) and EMBASE (1947–2017) to identify PROMs and studies evaluating their measurement properties. Analysis of studies followed the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology to inform a best evidence synthesis. From 1,128 articles, we identified 29 PROMs. Subsequently, we identified 8 studies evaluating the measurement properties of 7 instruments. Among these instruments, the Simplified Psoriasis Index (SPI) achieved a positive rating for criterion validity, the Dutch version of the Children’s Dermatology Life Quality Index (CDLQI) achieved a positive rating for hypothesis testing, and the Swedish version of the CDLQI achieved a negative rating for hypothesis testing. All other assessed measurement properties received indeterminate or unknown ratings due to flaws in study design. PROMs are paramount to the management of pediatric psoriasis. This synthesis emphasizes the critical need for additional studies to further describe the measurement properties of PROMs used in pediatric psoriasis and identify validated, standardized measures for use in clinical practice and research.

儿童起病型银屑病对儿科患者的生长发育与生活质量均具有显著负面影响。因此，针对儿童银屑病的经验证患者报告结局量表（patient-reported outcome measures, PROMs）对患者诊疗至关重要。本研究旨在对儿童银屑病人群中所使用的PROMs的测量学属性相关文献进行严格评价。我们采用两阶段系统文献综合法，检索MEDLINE（1950–2017）与EMBASE（1947–2017）数据库，以筛选相关PROMs及评估其测量学属性的研究。研究分析遵循健康测量工具遴选共识标准（COnsensus-based Standards for the selection of health Measurement INstruments, COSMIN）方法学，以开展最佳证据综合。从1128篇文献中，我们共筛选出29种PROMs。后续又筛选出8项针对7种工具测量学属性的评估研究。在上述工具中，简化银屑病指数（Simplified Psoriasis Index, SPI）的效标效度获得阳性评级；荷兰语版儿童皮肤病生活质量指数（Children’s Dermatology Life Quality Index, CDLQI）的假设检验结果获得阳性评级，而瑞典语版CDLQI的假设检验结果则获得阴性评级。由于研究设计存在缺陷，其余所有被评估的测量学属性均被评为不确定或未知等级。PROMs对儿童银屑病的诊疗管理极为关键。本次文献综合凸显了开展额外研究的迫切需求：需进一步阐明儿童银屑病相关PROMs的测量学属性，并筛选出经验证的标准化量表，以供临床实践与研究使用。