Rheumatology and Rehabilitation, School of Medicine Ain Shams University, Cairo, Egypt.
Rheumatology, Medway Foundation Trust, Gillingham, Kent, ME7 5NY, UK.
Clin Rheumatol. 2019 Nov;38(11):3217-3225. doi: 10.1007/s10067-019-04687-y. Epub 2019 Jul 20.
To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes.
The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols.
A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients' adherence to therapy was significantly (p < 0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly higher in the control group at 12 months of treatment. There was a significant improvement in the patient-reported outcomes in the SDM group, and absence from school was significantly higher in the control group (p < 0.01).
The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes. Key Points • This work represents the second generation of shared decision-making tools. • The developed tool adopts an interactive style and enhances critical thinking, giving the patients the facility of making their own decision regarding their management. • The work gives an example of core domain set of outcomes which can be used for shared decision-making interventions.
开发并评估一种针对 JIA 儿童的、独立的、互动式、基于证据的共同决策辅助工具，以观察其是否能让 JIA 患儿积极参与自身疾病管理，并评估其对患儿治疗依从性、缺课情况和治疗结局的影响。
该共同决策辅助工具旨在提供关于疾病、治疗风险和获益的信息。一个多学科团队根据国际标准（IPDAS）定义了共同决策标准。有 8 个类别被认为对共同决策非常重要。每个类别都以互动式的简单插图呈现。在每个类别的末尾，会要求患儿根据所提供的信息做出决策。在一项随机对照研究中，94 名 JIA 患儿接受了该工具，对照组为 95 名按标准方案治疗的 JIA 患儿。
研究中，97.5%的患儿表示对工具的理解程度超过 90%。在共同决策组中，患儿的治疗依从性显著更高（p<0.01），而在对照组中，因不耐受而停止 DMARDs 的比例在治疗 12 个月时显著更高。共同决策组的患者报告结局显著改善，对照组的缺课率显著更高（p<0.01）。
所开发的共同决策辅助工具为患儿提供了关于治疗选择利弊的循证信息，提高了他们对疾病的理解能力和做出知情决策的能力，从而提高了他们的治疗依从性和治疗结局。关键点• 这是第二代共同决策工具。• 所开发的工具采用了互动式风格，增强了批判性思维，使患儿能够方便地就自身管理做出决策。• 该研究为共同决策干预提供了一套可用于评估的核心结局域。
