Wray Jo, Russell Jessica, Gibson Faith, Kenten Charlotte, Oulton Kate
Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Institute of Cardiovascular Science, University College London, London, UK.
Health Expect. 2025 Feb;28(1):e70168. doi: 10.1111/hex.70168.
The importance of enabling patients to provide feedback on their experience of healthcare is widely accepted but there are few appropriate measures to enable children and young people to directly provide feedback, particularly those with intellectual disability or younger children. Our primary aim was to develop and test patient-reported experience measures for children and young people with intellectual disability who use inpatient hospital services. A secondary aim was to test these measures with younger children aged 4-7 years without intellectual disability.
A hospital inpatient patient-reported experience measure previously developed for children aged 8-11 years was revised iteratively in conjunction with a parent advisory group (comprising five parents of children and young people with and without intellectual disability) and children and young people with intellectual disability. The final patient-reported experience measure was tested in children's inpatient wards at seven hospitals in England over a 3-month period.
Parents suggested a need for a single patient-reported experience measure for all children with intellectual disability which contained simpler language, fewer questions and response options, and images to illustrate each question. The final patient-reported experience measure had 22 questions, each with a corresponding image, and a free text box in which children could add anything further. Questions addressed environment, people, care and treatment and safety. During testing at seven children's hospitals, 52 children and young people with intellectual disability (4-18 years) and 76 children without intellectual disability (4-7 years), all of whom received inpatient care, completed the patient-reported experience measure. Two percent of data were missing; in 16 instances respondents either ticked two responses or placed a tick between two response categories. Half the respondents added comments and/or drew a picture.
The development of a patient-reported experience measure for children and young people with intellectual disability provides a previously unavailable opportunity for them to report on their experiences of inpatient care and have their voices heard. Future work to extend testing to a wider group is underway and will enable us to clarify whether one patient-reported experience measure is valid and reliable for all children and young people with intellectual disability.
A parent advisory group, comprising parents/carers of young people with or without a learning disability, advised on all aspects of the wider study design and specifically on revisions to the measure reported in this manuscript. The parent advisory group met twice a year during the study with email contact between meetings for specific requests and study updates. Representatives of the advisory group also attended the study steering group.
让患者对其医疗体验提供反馈的重要性已得到广泛认可，但几乎没有合适的措施能让儿童和青少年直接提供反馈，尤其是那些有智力残疾的儿童或年幼的儿童。我们的主要目标是为使用住院医院服务的智力残疾儿童和青少年开发并测试患者报告体验测量工具。次要目标是对4至7岁无智力残疾的年幼儿童测试这些测量工具。
与一个家长咨询小组（由五名有或无智力残疾儿童和青少年的家长组成）以及智力残疾儿童和青少年一起，对先前为8至11岁儿童开发的医院住院患者报告体验测量工具进行了反复修订。最终的患者报告体验测量工具在英格兰七家医院的儿童住院病房进行了为期3个月的测试。
家长们建议为所有智力残疾儿童制定一个单一的患者报告体验测量工具，该工具应使用更简单的语言、更少的问题和回答选项，并配有图片来说明每个问题。最终的患者报告体验测量工具有22个问题，每个问题都配有相应的图片，还有一个自由文本框，儿童可以在其中添加任何其他内容。问题涉及环境、人员、护理与治疗以及安全。在七家儿童医院进行测试期间，52名智力残疾儿童和青少年（4至18岁）以及76名无智力残疾儿童（4至7岁），他们均接受了住院治疗，完成了患者报告体验测量工具。2%的数据缺失；在16个案例中，受访者要么勾选了两个回答，要么在两个回答类别之间打了勾。一半的受访者添加了评论和/或画了一幅画。
为智力残疾儿童和青少年开发患者报告体验测量工具为他们提供了一个前所未有的机会来报告其住院护理体验并让他们被倾听。将测试扩展到更广泛群体的未来工作正在进行，这将使我们能够阐明一个患者报告体验测量工具对所有智力残疾儿童和青少年是否有效且可靠。
一个家长咨询小组，由有或无学习障碍青少年的家长/照顾者组成，就更广泛研究设计的所有方面提供建议，特别是对本手稿中报告的测量工具的修订。在研究期间，家长咨询小组每年开会两次，会议期间通过电子邮件联系以处理特定请求和研究更新。咨询小组的代表也参加了研究指导小组。
