Siddiq Sab, Ainsworth Jenny Sammy, Pain Clare E, Smith Eve M D, Zhao Sizheng Steven, Hughes David M, McCann Liza J
Department of Health Data Science, Institute of Population Health, University of Liverpool, Waterhouse Building, Block F, 1-5 Brownlow Street, Liverpool, L69 3GL, UK.
Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.
BMC Rheumatol. 2025 Apr 9;9(1):40. doi: 10.1186/s41927-025-00492-0.
Childhood-onset rheumatic diseases, such as juvenile idiopathic arthritis, juvenile-onset lupus and juvenile dermatomyositis, appear to be associated with an increased risk of comorbidities in adulthood compared to the general population. For the first stage of a research project evaluating this topic, we wanted to capture views from young people with juvenile-onset rheumatic disease to ensure that further work was relevant to their lived experience and priorities. This study aimed to determine (i) which comorbidities young people identify as important, (ii) how they access information about their disease, including comorbidity risk, whether (iii) they would like to hear about the risk of comorbidities whilst they are under paediatric care, and (iv) would be motivated to make lifestyle choices to decrease the risk of potential comorbidities.
A topic guide based on the proposed study aims was developed, and PowerPoint slides were prepared to facilitate three focus group discussions to gain insights from young people. Focus groups were conducted via video platform, and the views of young people were assimilated using notetaking and an online interactive polling tool.
A total of 18 young people between 10 and 27 years of age participated in the focus groups. Mental health (including depression and anxiety) was described as important comorbidity by 17/18 (94%), followed by obesity or being overweight by 9/18 (50%), heart disease by 7/18 (39%) and stroke by 5/18 (28%) of participants. Young people reported searching United Kingdom National Health Service websites, charity resources, and Google for information on their disease and associated comorbidities. They stated that they would be willing to change their lifestyle to reduce the risk of comorbidities if information were given to them sensitively with clear practical steps for reducing risk.
Three groups of young people identified risk of mental health issues, obesity, and cardiovascular morbidities as particularly important to them. They reported searching online platforms related to their disease and increasingly accessed online resources as they transitioned from paediatric to adult care. Participants thought it would be helpful to provide information on young people's disease and associated comorbidity in a motivational and sensitive way.
Not applicable.
儿童期起病的风湿性疾病，如幼年特发性关节炎、幼年型狼疮和幼年皮肌炎，与成年期合并症风险增加相关，相较于普通人群。作为评估该主题的研究项目的第一阶段，我们希望收集患有幼年起病风湿性疾病的年轻人的观点，以确保后续工作与他们的生活经历和优先事项相关。本研究旨在确定：（i）年轻人认为哪些合并症很重要；（ii）他们如何获取有关自身疾病的信息，包括合并症风险；（iii）在儿科护理期间，他们是否希望了解合并症风险；以及（iv）是否有动力做出生活方式选择以降低潜在合并症风险。
根据拟议的研究目标制定了主题指南，并准备了PowerPoint幻灯片以促进三场焦点小组讨论，从而深入了解年轻人的看法。焦点小组通过视频平台进行，通过笔记记录和在线交互式投票工具收集年轻人的观点。
共有18名年龄在10至27岁之间的年轻人参加了焦点小组。17/18（94%）的参与者将心理健康（包括抑郁和焦虑）描述为重要的合并症，其次是肥胖或超重，有9/18（50%）的参与者提及，7/18（39%）的参与者提到心脏病，5/18（28%）的参与者提到中风。年轻人报告称通过搜索英国国家医疗服务体系网站、慈善资源和谷歌来获取有关自身疾病及相关合并症的信息。他们表示，如果能以敏感且提供明确降低风险实用步骤的方式向他们提供信息，他们愿意改变生活方式以降低合并症风险。
三组年轻人认为心理健康问题、肥胖和心血管疾病的风险对他们尤为重要。他们报告称在从儿科护理过渡到成人护理期间，会搜索与自身疾病相关的在线平台并越来越多地获取在线资源。参与者认为以激励且敏感的方式提供有关年轻人疾病及相关合并症的信息会有所帮助。
不适用。
