Towards standardization of person-reported outcomes (PROs) in pediatric diabetes research: A consensus report

IF 3.2 3区医学 Q2 ENDOCRINOLOGY & METABOLISM

Diabetic Medicine Pub Date : 2024-12-17 DOI:10.1111/dme.15484

Katharine Barnard-Kelly, David Marrero, Maartje de Wit, Frans Pouwer, Kamlesh Khunti, Norbert Hermans, Jessica S. Pierce, Lori Laffel, Richard I. G. Holt, Tadej Battelino, Diana Naranjo, Jacqueline Fosbury, Lawrence Fisher, William Polonsky, Jill Weissberg-Benchell, Korey K. Hood, Oliver Schnell, Laurel H. Messer, Thomas Danne, Revital Nimri, Soren Skovlund, Julia K. Mader, Jennifer L. Sherr, Desmond Schatz, Simon O'Neill, Emma Doble, Marissa Town, Karin Lange, Carine de Beaufort, Linda Gonder-Frederick, Sarah S. Jaser, Alon Liberman, David Klonoff, Nuha A. Elsayed, Raveendhara R. Bannuru, Ramzi Ajjan, Christopher Parkin, Frank J. Snoek

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引用次数: 0

Abstract

Background

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.

Methods

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.

Results

This consensus statement provides an exploration of person-reported outcomes and how to routinely assess and incorporate into clincial research.

查看原文本刊更多论文

儿童糖尿病研究中个人报告结果（PROs）的标准化：一份共识报告。

背景：糖尿病是儿童和青少年最常见的慢性疾病之一。它在慢性病中是独特的，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如何对良好临床实践指导作出反应和实施密切相关。人们普遍认识到，应该处理个人对试图控制疾病的影响以及自我管理负担的看法，以实现最佳的健康结果。对行为和精神健康结果进行标准化、严格的评估，对于帮助理解个人报告的结果以及与身体健康结果相互作用的结果至关重要。虽然人们很容易将个人报告的结果概念化为关注感知的生活质量，但现实情况是，与健康有关的生活质量是多维的，包括身体或功能健康状况、心理健康和社会福祉等指标。方法：在此背景下，一组糖尿病专家制定了本共识声明，总结了儿童和青少年及其父母/照顾者在评估和使用个人报告结果测量方法中得出的中心主题和经验教训，有助于为这些测量方法的未来标准化研究和常规临床应用提供平台。结果：这一共识声明提供了对个人报告结果的探索，以及如何常规评估和纳入临床研究。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Diabetic Medicine 医学-内分泌学与代谢

CiteScore

7.20

自引率

5.70%

发文量

229

审稿时长

3-6 weeks

期刊介绍： Diabetic Medicine, the official journal of Diabetes UK, is published monthly simultaneously, in print and online editions. The journal publishes a range of key information on all clinical aspects of diabetes mellitus, ranging from human genetic studies through clinical physiology and trials to diabetes epidemiology. We do not publish original animal or cell culture studies unless they are part of a study of clinical diabetes involving humans. Categories of publication include research articles, reviews, editorials, commentaries, and correspondence. All material is peer-reviewed. We aim to disseminate knowledge about diabetes research with the goal of improving the management of people with diabetes. The journal therefore seeks to provide a forum for the exchange of ideas between clinicians and researchers worldwide. Topics covered are of importance to all healthcare professionals working with people with diabetes, whether in primary care or specialist services. Surplus generated from the sale of Diabetic Medicine is used by Diabetes UK to know diabetes better and fight diabetes more effectively on behalf of all people affected by and at risk of diabetes as well as their families and carers.”