PROactive Cohort Study: Data

<p> Children with a chronic disease face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. In the long run, children with a chronic disease reach developmental milestones later than their healthy peers and many children will remain dependent on medication and/ or will be limited in their daily life activities.</p>

<p> The PROactive Cohort Study aims to assess fatigue, participation, and psychosocial well-being across children with various chronic diseases over the course of their lifespan since their increased vulnerability is a fact. These factors have the potential to influence their identity and how they grow into autonomous adults that take part in our society. Also the PROactive Cohort Study is aimed at supporting people with chronic and/or life-threatening conditions to increase their ability to adapt, and their self-manage capacities. This means that PROactive also systematically monitors the child's capacity and ability to play and the well-being of the patients and their families. This knowledge can be used as an innovative and interactive method for creating prevention and treatment strategies. This will help to assess vulnerabilities and resilience among children with chronic and/or life-threatening conditions and their families. </p>

<p> This cohort study follows a continuous longitudinal design. It is based at the Wilhelmina Children's Hospital in the Netherlands and has been running since December 2016. Children with a chronic disease (e.g. cystic fibrosis, juvenile idiopathic arthritis, chronic kidney disease, or congenital heart disease) in a broad age range (2-18 years) are included, as well as their parent(s). Patient-reported outcome measures (PROMs) are collected from parents (children between 2-18 years) and children (8-18 years). The PROactive Cohort Study uses a flexible design in which the research assessment is an integrated part of clinical care. Children are included when they visit the outpatient clinic and are followed up annually, preferably linked to another outpatient visit. </p>

罹患慢性疾病的儿童相较于健康同龄人面临更多障碍，这可能对其躯体、社会情感及认知发育造成不良影响。长期来看，慢性疾病患儿的发育里程碑达成时间晚于健康同伴，且多数患儿需长期依赖药物治疗，或日常活动能力受限。

PROactive队列研究（PROactive Cohort Study）旨在评估各类慢性疾病儿童在整个生命周期中的疲劳程度、社会参与度及心理社会福祉，鉴于这类群体的易损性已得到公认。上述因素可能影响患儿的自我认同，以及他们成长为能够融入社会的自主成年人的过程。此外，本研究旨在帮助慢性及/或致命性疾病患者提升适应能力与自我管理水平。为此，PROactive队列研究还将系统性监测患儿的游戏能力与活动表现，以及患者及其家属的福祉状况。相关研究成果可作为创新互动式方法，用于制定疾病预防与治疗策略，助力评估慢性及/或致命性疾病儿童及其家庭的易损性与韧性水平。

本队列研究采用连续性纵向研究设计，依托荷兰威廉敏娜儿童医院开展，自2016年12月起正式启动。研究纳入年龄跨度为2至18岁的各类慢性疾病儿童（如囊性纤维化、幼年特发性关节炎、慢性肾脏病或先天性心脏病患者）及其父母。研究将从2-18岁儿童的父母，以及8-18岁患儿处收集患者报告结局指标（Patient-reported outcome measures, PROMs）。PROactive队列研究采用灵活研究设计，将研究评估整合入临床诊疗流程中。患儿在门诊就诊时即可纳入研究，并每年接受一次随访，优先与其他门诊就诊时段同步开展。