Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox.
Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox.
复制标题
慢性病患者体验映射工具箱的开发和测试。
DOI：
10.1007/s40271-023-00658-3
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发表时间：
2024
期刊：
影响因子：
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通讯作者：
NationalHealthCouncil’sPatientExperienceMappingWorkgroup
中科院分区：
文献类型：
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作者：
Oehrlein,ElisabethM;Schoch,Silke;Majercak,Kelsie;Gressler,LauraElisabeth;Costantino,RyanC;Love,TRosie;Perfetto,EleanorM;NationalHealthCouncil’sPatientExperienceMappingWorkgroup
背景利益相关者越来越希望研究和护理服务能够以患者体验为指导并优化患者体验。然而，让患者参与收集有关其经验，优先事项和预期结果的高质量数据的标准化工具尚未公开。本研究的目的是开发和测试一个具有疾病不可知的访谈指南模板和相应资源的访谈指南，以帮助研究人员让患有慢性疾病的患者参与关于他们的经验的对话。开发概念模型，起草访谈指南模板和面向患者的视觉材料。通过对2020年12月至2021年4月期间被诊断患有慢性/潜在致残性疾病的美国患者进行虚拟认知（n= 5）和试点（n= 30）访谈，对材料进行了测试/改进。健康素养专家审查了面向患者的工具的适用性/可及性。英语为母语的成年人自我报告接受慢性疾病诊断至少6个月前参加了60-90分钟interview.ResultsPatient经验的概念组织主题下三个领域：（1）生活前的诊断，（2）经验得到诊断，和（3）经验与诊断生活。一个简单的语言同意书模板，面试指南模板，和病人的经验概念模型的基础上，从受访者，面试官，和conclusionsA疾病不可知的病人参与度的输入开发和测试，以捕捉病人的经验数据的基础上进行了修订。这些材料可以根据研究目标进行定制，并由各种利益相关者利用，以确定加强以患者为中心的医疗保健服务和研究的机会。
BackgroundStakeholders increasingly expect research and care delivery to be guided by and to optimize patient experiences. However, standardized tools to engage patients to gather high-quality data about their experiences, priorities, and desired outcomes are not publicly available. The objective of this study was to develop and test a Toolbox with a disease-agnostic interview guide template and accompanying resources to assist researchers in engaging patients living with chronic disease in a dialogue about their experiences.MethodsGuided by a multidisciplinary workgroup, a targeted literature review (PubMed) was conducted, followed by group discussions to identify/thematically organize patient experience concepts, development of a conceptual model, and drafting of an interview guide template and patient-facing visual. Materials were tested/refined via cognitive (n= 5) and pilot (n= 30) interviews conducted virtually with US patients diagnosed with chronic/potentially disabling conditions from December 2020 to April 2021. Patient-facing tools were reviewed by health literacy experts for applicability/accessibility. English-speaking adults who self-reported receiving a chronic condition diagnosis at least 6 months prior participated in a 60–90 min interview.ResultsPatient experience concepts were organized thematically under three domains: (1) life before a diagnosis, (2) experiences getting a diagnosis, and (3) experiences living with a diagnosis. A plain language consent sheet template, interview guide template, and patient experience conceptual model were developed and revised based on input from interviewees, interviewers, and the workgroup.ConclusionsA disease-agnostic patient-engagement Toolbox was developed and tested to capture patient experience data. These materials can be customized based on study objectives and leveraged by various stakeholders to identify opportunities to enhance the patient centricity of healthcare delivery and research.