Robbins Rebecca, Dudley Katherine A, Monten Kristen N, Le Colin, Hanes Sherry, Patel Sanjay R, Bertisch Suzanne M
Division of Sleep Medicine, Harvard Medical School, Boston, Massachusetts.
Division of Sleep and Circadian Disorders, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts.
ATS Sch. 2022 Jan 4;3(1):48-63. doi: 10.34197/ats-scholar.2021-0055OC. eCollection 2022 Mar.
The current care pathway for screening, diagnosis, and treatment for obstructive sleep apnea (OSA) is often fragmented and heavily reliant on patient action, leading to delays and gaps in care, which disproportionately affect race and ethnic minorities. There is a need for well-designed, accessible patient education materials (PEMs) to improve OSA awareness and empower those at risk for the condition with the necessary knowledge and skills to adhere to treatment.
Our study aimed to evaluate the understandability, accessibility, actionability, and readability of web-based PEMs designed for patients with OSA and their families and caregivers.
We engaged patients with OSA, clinicians, and patient advocates ( = 11) to identify a list of web-based OSA PEMs from the media, medical centers, medical device companies, and health professional and patient advocacy organizations. Two trained coders scored the PEMs using validated health communication assessments, including the Centers for Disease Control and Prevention Clear Communication Index (CCI; on a scale from 0 to 100%); the Patient Education Materials Assessment Tool (PEMAT), which features subscales for understandability and actionability, each measured from 0 to 100%; and readability measures, including the Simple Measure of Gobbledygook and Flesch-Kincaid, which correspond to grade levels.
We identified 20 web-based PEMs, which included websites ( = 12, 60%), online flyers ( = 4, 20%), videos ( = 3, 15%), and one discussion board ( = 1, 5%). Scores on the CCI ranged from 21.4 to 85.7%. No PEMs met the CCI cutoff (90%). Scores on the PEMAT scales for understandability ranged from 37.5 to 100%. Scores on the PEMAT scales for actionability ranged from 0 to 100%. Fifteen percent of the PEMs met the PEMAT cutoff for understandability and actionability. Readability of the PEMs ranged from a 5th to a 15th-grade reading level, as scored by the Simple Measure of Gobbledygook and Flesch-Kincaid. Only one PEM (5%) met the recommended sixth-grade reading level.
Our study found that the majority of commonly used web-based PEMs for OSA did not meet recommended standards for clear communication and health literacy demands. OSA practitioners and future research should consider health communication best practices to design PEMs that reduce the gap between materials and average patient health literacy.
目前阻塞性睡眠呼吸暂停（OSA）的筛查、诊断和治疗护理路径往往支离破碎，严重依赖患者行动，导致护理延误和缺口，这对种族和少数族裔的影响尤为严重。需要精心设计、易于获取的患者教育材料（PEMs），以提高对OSA的认识，并使有该疾病风险的人具备坚持治疗所需的知识和技能。
我们的研究旨在评估为OSA患者及其家人和护理人员设计的基于网络的PEMs的可理解性、可及性、可操作性和可读性。
我们邀请了OSA患者、临床医生和患者权益倡导者（n = 11），从媒体、医疗中心、医疗设备公司以及健康专业和患者权益组织中确定一份基于网络的OSA PEMs清单。两名经过培训的编码员使用经过验证的健康沟通评估工具对PEMs进行评分，包括疾病控制和预防中心的清晰沟通指数（CCI；范围为0至100%）；患者教育材料评估工具（PEMAT），其具有可理解性和可操作性子量表，每个子量表的测量范围为0至100%；以及可读性测量工具，包括对应年级水平的简单晦涩度测量法和弗莱什-金凯德阅读难度分级法。
我们确定了20份基于网络的PEMs，其中包括网站（n = 12，60%）、在线传单（n = 4，20%）、视频（n = 3，15%）和一个讨论板（n = 1，5%）。CCI评分范围为21.4%至85.7%。没有PEMs达到CCI的临界值（90%）。PEMAT可理解性子量表的评分范围为37.5%至100%。PEMAT可操作性子量表的评分范围为0至100%。15%的PEMs达到了PEMAT可理解性和可操作性的临界值。根据简单晦涩度测量法和弗莱什-金凯德阅读难度分级法，PEMs的可读性范围为五年级至十五年级阅读水平。只有一份PEM（5%）达到了推荐的六年级阅读水平。
我们的研究发现，大多数常用的基于网络的OSA PEMs不符合清晰沟通和健康素养要求的推荐标准。OSA从业者和未来的研究应考虑健康沟通的最佳实践，以设计出缩小材料与患者平均健康素养之间差距的PEMs。
