面向成年自闭症患者及其初级保健提供者的在线医疗保健工具包的开发与评估。
The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.
作者信息
Nicolaidis Christina, Raymaker Dora, McDonald Katherine, Kapp Steven, Weiner Michael, Ashkenazy Elesia, Gerrity Martha, Kripke Clarissa, Platt Laura, Baggs Amelia
机构信息
Regional Research Institute, School of Social Work, Portland State University, 1600 SW 4th Ave, Suite 900, Portland, OR, 97201, USA.
Department of Medicine and School of Public Health, Oregon Health & Science University, Portland, OR, USA.
出版信息
J Gen Intern Med. 2016 Oct;31(10):1180-9. doi: 10.1007/s11606-016-3763-6. Epub 2016 Jun 6.
BACKGROUND
The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.
OBJECTIVE
Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults.
DESIGN
Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.
PARTICIPANTS
A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States.
INTERVENTIONS
The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers.
MAIN MEASURES
Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions.
KEY RESULTS
Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %).
CONCLUSIONS
The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.
背景
医疗保健系统在满足自闭症谱系成年患者需求方面准备不足。
目的
我们的目标是采用基于社区的参与性研究（CBPR）方法来开发和评估有助于自闭症成年患者初级医疗保健的工具。
设计
工具包开发包括认知访谈和重测信度研究。评估采用混合方法、单臂干预前后比较。
参与者
共有259名居住在美国的自闭症成年患者和51名初级保健提供者（PCP）。
干预措施
AASPIRE医疗保健工具包包括自闭症医疗保健便利工具（AHAT）——一种允许患者为其初级保健提供者创建个性化便利报告的工具——以及针对患者和医疗保健提供者的一般医疗保健和自闭症相关信息、工作表、清单及资源。
主要测量指标
对医患沟通的满意度、医疗保健自我效能感、医疗保健障碍以及对工具包可用性和实用性的满意度；对开放式问题的回答。
关键结果
AHAT的初步测试显示出较强的内容效度和足够的重测稳定性。几乎所有患者参与者（>94%）都认为AHAT和工具包易于使用、重要且有用。在干预前后比较中，障碍的平均数量减少（从4.07降至2.82，p<0.0001），医疗保健自我效能感增加（从37.9升至39.4，p=0.02），对初级保健提供者沟通的满意度提高（从30.9升至32.6，p=0.03）。患者表示，该工具包有助于明确他们的需求，使他们能够更有效地自我主张并为就诊做好准备，且对提供者的行为产生了积极影响。大多数接受调查的初级保健提供者阅读了AHAT（97%），将其评为中度或非常有用（82%），并会向其他患者推荐（87%）。
结论
CBPR过程产生了一个可靠的医疗保健便利工具和一个极易获取的医疗保健工具包。患者和提供者表示，这些工具对医疗保健互动产生了积极影响。该工具包有可能减少医疗保健障碍，提高医疗保健自我效能感和医患沟通。
Zotero 插件