Children's Hospital of Eastern Ontario Research Institute, 401 Smyth Road, Ottawa, ON, K1H 8L1, Canada.
Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Patient. 2020 Dec;13(6):719-728. doi: 10.1007/s40271-020-00458-z. Epub 2020 Oct 9.
Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options.
The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability.
We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8-18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis.
The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs.
The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.
青少年特发性关节炎（JIA）患者常经历疼痛，这降低了他们的生活质量。针对这些患者，存在多种疼痛管理选择，但在临床环境中很少讨论。我们的团队正在开发一个基于网络的患者决策辅助工具（PDA），以帮助 JIA 患者、家长和他们的医疗保健提供者（HCP）就疼痛管理选择做出明智且基于偏好的决策。
本研究的目的是开发基于网络的 PDA 的纸质原型，并评估其可接受性。
我们使用迭代过程，遵循国际患者决策辅助工具标准并基于渥太华决策支持框架，开发了一个基于网络的 PDA 的纸质原型，称为 JIA 选择图。我们举行了三次共识会议和一次后续在线调查，随后团队成员进行讨论，以就 PDA 的格式和内容达成一致。然后，我们通过对 12 名 JIA 青少年（8-18 岁）、12 名家长和 11 名 HCP 进行访谈来评估可接受性。来自加拿大和美国风湿病诊所的参与者审查了 PDA，并评估了其有用性、内容和格式。访谈进行了录音，并逐字转录，然后使用简单的描述性内容分析进行分析。
PDA 包含疼痛和当前治疗的评估、价值观澄清练习、33 种治疗选择的清单以及目标设定练习。所有参与者都认为这将是一个有用的工具，可以帮助他们做出疼痛管理决策。参与者赞赏将科学证据和视觉效果纳入其中，以展示治疗选择的益处，但建议更详细地描述证据来源。参与者建议在现有的治疗选择中增加补充医学和营养，并删除主要用于减轻炎症的选择。大多数参与者更喜欢具有交互功能的基于网络的 PDA 版本，该版本将显示与他们的偏好一致的几个选项，然后与 HCP 进行讨论。
所有参与者都认为 PDA 可以接受，只需进行一些修改。根据这些反馈，我们对 PDA 进行了改进，简化并澄清了信息，并调整了呈现的治疗选择数量。目前正在努力开发一个具有算法的交互式基于网络的版本，该算法可以为每个用户量身定制呈现的选项。
