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IF 15 1区医学 Q1 RHEUMATOLOGY

Lancet Rheumatology Pub Date : 2024-12-05 DOI:10.1016/S2665-9913(24)00233-9

Brooke Conley, Jane Linton, Jonathan Bullen, Ivan Lin, Rachel Toovey, Jennifer Persaud, Penny O'Brien, Ryan Prehn, Janet Bromley, Nola Gregory, Trevor Pickett, Lennelle Papertalk, Charmaine Green, Wanda Flanagan, Samantha Bunzli

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引用次数: 0

摘要

背景：在全球范围内，骨关节炎、类风湿性关节炎和痛风（关节炎病症）造成了相当大的痛苦和折磨，对原住民的影响尤为严重，他们比非原住民更有可能患有关节炎病症，承受着更大的疾病负担。获得文化上适当的健康信息有助于原住民的健康和福祉。本研究旨在确定基于证据的、文化上适宜的建议，为土著居民和托雷斯海峡岛民（澳大利亚原住民）关节炎教育资源的开发提供参考：这项采用社区参与式行动研究的混合方法研究分为三个阶段：与原住民进行访谈（研究纱线），探索他们对关节炎教育资源的信息需求和偏好；对高质量关节炎临床实践指南中的教育建议进行系统回顾和综合；对前两个阶段的数据集进行整合和解释。这三项系统性回顾的详情已在之前发表。我们只纳入了符合高质量纳入标准的临床实践指南，并使用研究与评估指南评估 II 工具进行评估：在 2020 年 12 月 24 日至 2022 年 11 月 2 日期间，30 名原住民参与了研究纱线。其中 21 人（70%）为女性，9 人（30%）为男性，年龄中位数为 60 岁（22-75 岁不等）。所有参与者都被认定为原住民，没有人被认定为托雷斯海峡岛民。研究纱线数据与 18 份临床实践指南中的教育建议相结合。综合这两个数据集，我们提出了以下建议，供纳入教育资源：关节炎对健康和福祉的影响、何时及如何获得护理、管理方案（如益处和风险）以及疾病知识（如预后和消除误解）。此外，教育资源不应使用专业术语，并应包括积极的生活经验故事、旗帜和丰富多彩的当地艺术。教育资源应由原住民制作，并由医疗专业人员、家人或原住民社区成员以小册子、视频或学习圈的形式提供：本研究提出的建议将有助于为原住民开发关节炎教育资源。研究结果还能支持医疗专业人员为原住民提供以证据为基础的关节炎护理。在国际上，以社区为基础的参与式行动研究方法可用于为原住民和社区开发教育资源：澳大利亚联邦政府通过澳大利亚关节炎协会提供资助。

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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Integrating evidence from lived experience of Aboriginal people and clinical practice guidelines to develop arthritis educational resources: a mixed-methods study.

Background: Globally, osteoarthritis, rheumatoid arthritis, and gout (arthritis conditions) result in considerable pain and suffering and disproportionately affect First Nations Peoples, who are more likely than non-First Nations Peoples to have an arthritis condition and to experience a higher burden of disease. Access to culturally appropriate health information supports the health and wellbeing of First Nations Peoples. The aim of this study was to identify evidence-based, culturally appropriate recommendations to inform the development of arthritis educational resources for Aboriginal and Torres Strait Islander Peoples (First Nations Peoples in Australia).

Methods: This mixed-methods study using community-based participatory action research had three phases: interviews (research yarns) with Aboriginal people to explore their informational needs and preferences for arthritis educational resources; systematic reviews and synthesis of education recommendations from high-quality arthritis clinical practice guidelines; and integration and interpretation of datasets from the first two phases. Details of the three systematic reviews have been published previously. We only included clinical practice guidelines that met our inclusion criterion of high quality, assessed using the Appraisal of Guidelines for Research and Evaluation II instrument.

Findings: Between Dec 24, 2020, and Nov 2, 2022, 30 Aboriginal people participated in research yarns. 21 (70%) participants were female and nine (30%) were male, with median age 60 years (range 22-75). All participants identified as Aboriginal and no participants identified as Torres Strait Islander. Research yarn data was combined with education recommendations from 18 clinical practice guidelines. Synthesis of the two datasets generated the following recommendations for inclusion in educational resources: the impact of arthritis on health and wellbeing, when and how to access care, management options (eg, benefits and risks), and disease knowledge (eg, prognosis and addressing misconceptions). In addition, educational resources should be jargon-free and include positive lived experience stories, flags, and colourful local art. Educational resources should be created by Aboriginal people and delivered by health professionals, family, or Aboriginal Community members in the form of brochures, videos, or yarning circles.

Interpretation: The recommendations from this study will inform the development of arthritis educational resources for Aboriginal Peoples. The findings can also support health professionals to deliver evidenced-based arthritis care to Aboriginal Peoples. Internationally, a community-based participatory action research approach can be applied to develop educational resources for First Nations Peoples and communities.

Funding: Australian Commonwealth Government through Arthritis Australia.

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来源期刊

Lancet Rheumatology RHEUMATOLOGY-

CiteScore

34.70

自引率

3.10%

发文量

279

期刊介绍： The Lancet Rheumatology, an independent journal, is dedicated to publishing content relevant to rheumatology specialists worldwide. It focuses on studies that advance clinical practice, challenge existing norms, and advocate for changes in health policy. The journal covers clinical research, particularly clinical trials, expert reviews, and thought-provoking commentary on the diagnosis, classification, management, and prevention of rheumatic diseases, including arthritis, musculoskeletal disorders, connective tissue diseases, and immune system disorders. Additionally, it publishes high-quality translational studies supported by robust clinical data, prioritizing those that identify potential new therapeutic targets, advance precision medicine efforts, or directly contribute to future clinical trials. With its strong clinical orientation, The Lancet Rheumatology serves as an independent voice for the rheumatology community, advocating strongly for the enhancement of patients' lives affected by rheumatic diseases worldwide.