Cronin Robert Michael, Mayo-Gamble Tilicia L, Stimpson Sarah-Jo, Badawy Sherif M, Crosby Lori E, Byrd Jeannie, Volanakis Emmanuel J, Kassim Adetola A, Raphael Jean L, Murry Velma M, DeBaun Michael R
1Department of Biomedical Informatics, Vanderbilt University Medical Center, 2525 West End Blvd., Suite 1475, Nashville, TN 37232 USA.
2Department of Internal Medicine, Vanderbilt University Medical Center, Nashville, TN USA.
BMC Hematol. 2018 Jun 8;18:12. doi: 10.1186/s12878-018-0106-3. eCollection 2018.
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.
From May-December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums ( = 64) and community listening sessions ( = 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.
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.
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.
已为初级卫生保健提供者制定了镰状细胞病（SCD）健康维护和管理的循证指南，但尚未针对SCD患者制定。为了提高为SCD患者及其护理人员提供的护理质量，本研究的主要目的是：（1）了解SCD群体对以患者为中心的指南的需求；（2）使用涉及医疗保健提供者、社区组织和患者的社区参与策略，将指南材料调整为以患者为中心。
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）和社区听证会（n = 43）上就健康信息的技术使用和对SCD相关指南的需求提供了反馈。一个由社区利益相关者、SCD患者以及九个机构的SCD提供者和研究人员（专家）组成的社区研究伙伴团队，根据以下标准将指南调整为以患者为中心：（1）易懂，（2）可操作，（3）有用。
在社区论坛（n = 64）中，几乎所有参与者（91%）都希望直接获取指南内容。参与者希望指南有多种形式，包括纸质版（73%）和移动设备版（79%）。指南被调整为以患者为中心。经过多次反馈迭代，100%的参与者表示指南易懂，大多数（88%）表示可操作，每个人（100%）都会使用这些调整后的指南与他们的医疗保健提供者讨论他们的医疗护理。
SCD患者及其护理人员希望通过多种渠道获取指南，包括技术渠道。为医疗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调整为以患者为中心。这些以患者为中心的指南为患者与医疗保健提供者讨论他们的医疗护理提供了一个框架。
