School of Medicine, Vanderbilt University, Nashville, TN, USA.
Department of Community Health, Georgia Southern University, Statesboro, GA, USA.
J Am Med Inform Assoc. 2018 Aug 1;25(8):976-988. doi: 10.1093/jamia/ocy036.
Sickle cell disease (SCD) is a chronic condition affecting over 100 000 individuals in the United States, predominantly from vulnerable populations. Clinical practice guidelines, written for providers, have low adherence. This study explored knowledge about guidelines; desire for guidelines; and how technology could support guideline awareness and adherence, examining current technology uses, and user preferences to inform design of a patient-centered guidelines application in a chronic disease.
This cross-sectional mixed-methods study involved semi-structured interviews, surveys, and focus groups of adolescents and adults with SCD. We evaluated interest, preferences, and anticipated benefits or barriers of a patient-centered adaptation of SCD practice guidelines; prospective technology uses for health; and barriers to technology utilization.
Forty-seven individuals completed surveys and interviews, and 39 participated in three separate focus groups. Most participants (91%) were unaware of SCD guidelines, but almost all (96%) expressed interest in a guidelines application, identifying benefits (knowledge, activation, individualization, and rewards), and barriers (poor information, low motivation, and resource limitations). Current technology health uses included information access, care coordination, and reminders about health-related actions. Prospective technology uses included informational messaging and timely alerts. Barriers to technology use included lack of interest, lack of utility, and preference for direct communication.
This study's findings can inform the design of clinical practice guideline applications, suggesting a promising role for technology to engage patients, facilitate care decisions and actions, and improve outcomes.
镰状细胞病（SCD）是一种影响美国超过 10 万人的慢性疾病，主要发生在脆弱人群中。为医疗服务提供者撰写的临床实践指南的遵从度较低。本研究旨在探讨有关指南的知识、对指南的需求，以及技术如何支持指南的认知和遵从性，检查当前技术的使用情况和用户偏好，为慢性病患者中心的指南应用程序的设计提供信息。
这是一项横断面混合方法研究，包括对患有 SCD 的青少年和成年人进行半结构式访谈、调查和焦点小组。我们评估了对 SCD 实践指南的患者为中心的改编的兴趣、偏好以及预期的收益或障碍；健康相关技术的预期用途；以及技术利用的障碍。
47 人完成了调查和访谈，39 人参加了三个单独的焦点小组。大多数参与者（91%）不知道 SCD 指南，但几乎所有人（96%）都对指南应用程序感兴趣，确定了其收益（知识、激活、个性化和奖励）和障碍（信息差、低动力和资源限制）。当前的技术健康用途包括信息访问、护理协调和有关健康相关行动的提醒。预期的技术用途包括信息传递和及时警报。技术使用的障碍包括缺乏兴趣、缺乏实用性和对直接沟通的偏好。
本研究的结果可以为临床实践指南应用程序的设计提供信息，表明技术在吸引患者、促进护理决策和行动以及改善结果方面具有很大的应用潜力。
