Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
Arch Dis Child. 2018 Oct;103(10):942-951. doi: 10.1136/archdischild-2017-314631. Epub 2018 Apr 11.
To evaluate research priority setting approaches in childhood chronic diseases and to describe the priorities of stakeholders including patients, caregivers/families and health professionals.
We conducted a systematic review of MEDLINE, Embase, PsycINFO and CINAHL from inception to 16 October 2016. Studies that elicited stakeholder priorities for paediatric chronic disease research were eligible for inclusion. Data on the prioritisation process were extracted using an appraisal checklist. Generated priorities were collated into common topic areas.
We identified 83 studies (n=15 722). Twenty (24%) studies involved parents/caregivers and four (5%) children. The top three health areas were cancer (11%), neurology (8%) and endocrine/metabolism (8%). Priority topic areas were treatment (78%), disease trajectory (48%), quality of life/psychosocial impact (48%), disease onset/prevention (43%), knowledge/self-management (33%), prevalence (30%), diagnostic methods (28%), access to healthcare (25%) and transition to adulthood (12%). The methods included workshops, Delphi techniques, surveys and focus groups/interviews. Specific methods for collecting and prioritising research topics were described in only 60% of studies. Most reviewed studies were conducted in high-income nations.
Research priority setting activities in paediatric chronic disease cover many discipline areas and have elicited a broad range of topics. However, child/caregiver involvement is uncommon, and the methods often lack clarity. A systematic and explicit process that involves patients and families in partnership may help to inform a more patient and family-relevant research agenda in paediatric chronic disease.
评价儿童慢性疾病的研究重点制定方法，并描述包括患者、照顾者/家庭和卫生专业人员在内的利益相关者的优先事项。
我们对 MEDLINE、Embase、PsycINFO 和 CINAHL 进行了系统回顾，检索时间从建库至 2016 年 10 月 16 日。符合纳入标准的研究需制定了儿童慢性疾病研究利益相关者的优先事项。使用评估检查表提取优先排序过程的数据。生成的优先事项被整理为常见的主题领域。
我们确定了 83 项研究（n=15722）。其中 20 项（24%）研究涉及父母/照顾者，4 项（5%）研究涉及儿童。排名前三的健康领域是癌症（11%）、神经科（8%）和内分泌/代谢（8%）。优先主题领域包括治疗（78%）、疾病进程（48%）、生活质量/心理社会影响（48%）、疾病发病/预防（43%）、知识/自我管理（33%）、患病率（30%）、诊断方法（28%）、获得医疗保健（25%）和向成年期过渡（12%）。方法包括研讨会、德尔菲技术、调查和焦点小组/访谈。只有 60%的研究详细描述了收集和优先考虑研究主题的具体方法。大多数综述研究都是在高收入国家进行的。
儿童慢性疾病的研究重点制定活动涵盖了许多学科领域，并提出了广泛的主题。然而，儿童/照顾者的参与并不常见，方法往往不够明确。一个系统和明确的过程，让患者及其家属参与其中建立伙伴关系，可能有助于为儿童慢性疾病制定更符合患者和家属需求的研究议程。
