Barnard-Kelly Katharine, Marrero David, de Wit Maartje, Pouwer Frans, Khunti Kamlesh, Hermans Norbert, Pierce Jessica S, Laffel Lori, Holt Richard I G, Battelino Tadej, Naranjo Diana, Fosbury Jacqueline, Fisher Lawrence, Polonsky William, Weissberg-Benchell Jill, Hood Korey K, Schnell Oliver, Messer Laurel H, Danne Thomas, Nimri Revital, Skovlund Soren, Mader Julia K, Sherr Jennifer L, Schatz Desmond, O'Neill Simon, Doble Emma, Town Marissa, Lange Karin, de Beaufort Carine, Gonder-Frederick Linda, Jaser Sarah S, Liberman Alon, Klonoff David, Elsayed Nuha A, Bannuru Raveendhara R, Ajjan Ramzi, Parkin Christopher, Snoek Frank J
Southern Health NHS Foundation Trust, Southampton, UK.
Indiana University School of Public Health, Bloomington, Indiana, USA.
Diabet Med. 2025 Mar;42(3):e15484. doi: 10.1111/dme.15484. Epub 2024 Dec 17.
Diabetes ranks among the most common chronic conditions in childhood and adolescence. It is unique among chronic conditions, in that clinical outcomes are intimately tied to how the child or adolescent living with diabetes and their parents or carers react to and implement good clinical practice guidance. It is widely recognized that the individual's perspective about the impact of trying to manage the disease together with the burden of self-management should be addressed to achieve optimal health outcomes. Standardized, rigorous assessment of behavioural and mental health outcomes is crucial to aid understanding of person-reported outcomes alongside, and in interaction with, physical health outcomes. Whilst tempting to conceptualize person-reported outcomes as a focus on perceived quality of life, the reality is that health-related quality of life is multi-dimensional and covers indicators of physical or functional health status, psychological well-being and social well- being.
In this context, this Consensus Statement has been developed by a collection of experts in diabetes to summarize the central themes and lessons derived in the assessment and use of person-reported outcome measures in relation to children and adolescents and their parents/carers, helping to provide a platform for future standardization of these measures for research studies and routine clinical use.
This consensus statement provides an exploration of person-reported outcomes and how to routinely assess and incorporate into clincial research.
糖尿病是儿童和青少年中最常见的慢性病之一。它在慢性病中独具特点，因为临床结果与患有糖尿病的儿童或青少年及其父母或照顾者对良好临床实践指南的反应和实施情况密切相关。人们普遍认识到，应关注个体对疾病管理影响以及自我管理负担的看法，以实现最佳健康结果。对行为和心理健康结果进行标准化、严格的评估，对于帮助理解个体报告结果以及与身体健康结果相互作用的情况至关重要。虽然将个体报告结果概念化为关注感知生活质量很诱人，但实际情况是，与健康相关的生活质量是多维度的，涵盖身体或功能健康状况、心理健康和社会福祉等指标。
在此背景下，由一群糖尿病专家制定了本共识声明，以总结在评估和使用与儿童、青少年及其父母/照顾者相关的个体报告结局指标方面得出的核心主题和经验教训，有助于为这些指标在研究和常规临床应用中的未来标准化提供一个平台。
本共识声明探讨了个体报告结果以及如何进行常规评估并纳入临床研究。
