Andersen Randi Dovland, Genik Lara, Alriksson-Schmidt Ann I, Anderzen-Carlsson Agneta, Burkitt Chantel, Bruflot Sindre K, Chambers Christine T, Jahnsen Reidun B, Jeglinsky-Kankainen Ira, Kildal Olav Aga, Ramstad Kjersti, Sheriko Jordan, Symons Frank J, Wallin Lars, Andersen Guro L
Department of Research Telemark Hospital Skien Norway.
Research Center for Habilitation and Rehabilitation Services and Models (CHARM) Institute of Health and Society University of Oslo Oslo Norway.
Paediatr Neonatal Pain. 2021 May 4;4(1):12-22. doi: 10.1002/pne2.12049. eCollection 2022 Mar.
Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.
疼痛是脑瘫（CP）患儿面临的一个重大健康问题。目前尚无使用通用指标来描述疼痛体验、干扰（即疼痛负担）以及CP患儿管理措施的人群层面或大规模跨国数据集。CPPain调查的目的是全面了解疼痛负担以及当前的疼痛管理情况，以改变CP的临床实践。CPPain调查是一项全面的横断面研究。研究人员计划在6至12个月内，通过多模式招募策略，在多个国家招募约1400名CP患儿（主要参与者）。将从CP患儿（0至17岁）的父母或监护人以及能够自我报告的CP患儿（8至17岁）那里收集数据。还将邀请兄弟姐妹（12至17岁）作为对照参与。CPPain调查包括先前经过验证的特定研究问卷，内容涉及人口统计学和诊断信息、疼痛体验、疼痛管理、疼痛干扰、疼痛应对、日常生活中的活动和参与情况、营养状况、心理健康、与健康相关的生活质量，以及新冠疫情对疼痛和获得疼痛护理的影响。该调查将主要通过在线方式进行分发。将使用适当的统计方法对数据进行分析以比较各组。将采用分层方法来研究亚组，并针对适当的社会人口统计学变量对分析进行调整。挪威医学与健康研究伦理区域委员会以及美国明尼苏达大学的研究伦理委员会已批准该研究。加拿大、瑞典和芬兰的伦理批准正在等待中。除了通过同行评审期刊和会议进行传播外，研究结果还将通过CPPain网站（www.sthf.no/cppain）、面向用户或临床医生的网站、社交媒体、特殊兴趣群体、利益相关者参与活动、用户组织期刊上的文章以及在公共媒体上的演讲进行传达。
