Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers.
Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers.
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DOI：
10.1186/s12878-018-0106-3
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发表时间：
2018-01-01
期刊：
影响因子：
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通讯作者：
DeBaun, Michael R
中科院分区：
文献类型：
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作者：
Cronin, Robert Michael;Mayo-Gamble, Tilicia L;DeBaun, Michael R
背景技术背景：镰状细胞病（SCD）的健康维护和管理的循证指南已开发的初级卫生保健提供者，但没有与SCD的个人。为了提高SCD患者及其护理人员的护理质量，本研究的主要目的是：（1）了解SCD社区对以患者为中心的指南的需求;（2）采用社区参与策略，使指南材料以患者为中心，包括医疗保健提供者，社区组织和疾病患者。从2016年5月至12月，107名SCD患者及其护理人员的志愿者样本在社区论坛（n=64）和社区倾听会议（n=43）上提供了关于健康信息技术使用和SCD相关指南需求的反馈。一个由社区利益相关者、SCD患者、九个机构的SCD提供者和研究人员（专家）组成的社区研究合作伙伴团队根据以下标准调整了以患者为中心的指南：（1）可理解，（2）可操作，（3）有用。在社区论坛（n=64）中，几乎所有参与者（91%）都希望直接访问指南的内容。参与者希望指南有多种格式，包括纸质（73%）和移动的设备（79%）。对指南进行了调整，以患者为中心。经过多次迭代的反馈，100%的参与者说，该指南是可以理解的，大多数（88%）说，他们是可操作的，每个人（100%）将使用这些适应的指南，讨论他们的医疗保健与他们的医疗保健providers.CONCLUSIONS：个人与SCD和他们的照顾者希望通过多种渠道，包括技术访问指南。为卫生保健提供者编写的指南可以通过涉及提供者和患者的社区参与研究进行调整，以患者为中心。这些以患者为中心的指南为患者提供了一个框架，以与他们的医疗保健提供者讨论他们的医疗保健。
BACKGROUND: Evidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease.METHODS: From May-December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums (n=64) and community listening sessions (n=43) about technology use for health information and desire for SCD-related guidelines. A team of community research partners consisting of community stakeholders, individuals living with SCD, and providers and researchers (experts) in SCD at nine institutions adapted guidelines to be patient-centered based on the following criteria: (1) understandable, (2) actionable, and (3) useful.RESULTS: In community forums (n=64), almost all participants (91%) wanted direct access to the content of the guidelines. Participants wanted guidelines in more than one format including paper (73%) and mobile devices (79%). Guidelines were adapted to be patient-centered. After multiple iterations of feedback, 100% of participants said the guidelines were understandable, most (88%) said they were actionable, and everyone (100%) would use these adapted guidelines to discuss their medical care with their health care providers.CONCLUSIONS: Individuals with SCD and their caregivers want access to guidelines through multiple channels, including technology. Guidelines written for health care providers can be adapted to be patient-centered using Community-engaged research involving providers and patients. These patient-centered guidelines provide a framework for patients to discuss their medical care with their health care providers.