A Health Communication Assessment of Web-based Obstructive Sleep Apnea Patient Education Materials.

Background: 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. Objective: 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. Methods: We engaged patients with OSA, clinicians, and patient advocates (n = 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. Results: We identified 20 web-based PEMs, which included websites (n = 12, 60%), online flyers (n = 4, 20%), videos (n = 3, 15%), and one discussion board (n = 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. Conclusion: 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.

Prevalence of sleepiness and associations with quality of life in patients with sleep apnea in an online cohort.

STUDY OBJECTIVES: Excessive daytime sleepiness (EDS) is a treatment target for many patients with obstructive sleep apnea (OSA). We aimed to understand the prevalence, risk factors, and quality of life associated with EDS in a nonclinical, "real world" sample of patients with OSA. METHODS: Cross-sectional survey of patients with OSA participating in an online peer support community, assessing demographics, comorbidities, treatment, and quality of life. Differences in those with and without EDS (Epworth Sleepiness Scale > and ≤ 10) were assessed. RESULTS: The sample (n = 422) was 54.2% male, 65.9% were ≥ 55 years, and 43.3% reported sleeping ≤ 6 hours/night. EDS was identified among 31.0% of respondents and 51.7% reported sleepiness as a precipitating factor for seeking initial OSA treatment. EDS was more prevalent in individuals reporting asthma, insomnia symptoms, positive airway pressure (PAP) use less than 6 hours/night on ≥ 5 nights/week, or sleep duration < 6 hours/night. After adjusting for demographics and comorbidities, patients with EDS reported poorer mental and physical health and well-being, lower disease-specific functional status, more activity and work impairment, and more driving impairment (P values < .05). In the subsample (n = 265) with high PAP adherence, 26.0% reported EDS, and similar associations between EDS and outcomes were observed. CONCLUSIONS: These "real world" data suggest that patients seeking online OSA support experience a high prevalence of EDS, which was associated with poorer quality of life and worse functional status. Associations persisted among respondents with high self-reported PAP-therapy adherence, potentially driving these individuals to seek online support for sleepiness-related symptoms. CITATION: Wanberg LJ, Rottapel RE, Reid ML, et al. Prevalence of sleepiness and associations with quality of life in patients with sleep apnea in an online cohort. J Clin Sleep Med. 2021;17(12):2363-2372.

Patient Partnerships Transforming Sleep Medicine Research and Clinical Care: Perspectives from the Sleep Apnea Patient-Centered Outcomes Network.

ABSTRACT: Due to an ongoing recent evolution in practice, sleep medicine as a discipline has been compelled to respond to the converging pressures to reduce costs, improve outcomes, and demonstrate value. Patient "researchers" are uniquely placed to participate in initiatives that address the specific needs and priorities of patients and facilitate the identification of interventions with high likelihood of acceptance by the "customer." To date, however, the "patient voice" largely has been lacking in processes affecting relevant policies and practice guidelines. In this Special Report, patient and research leaders of the Sleep Apnea Patient-Centered Outcomes Network (SAPCON), a national collaborative group of patients, researchers and clinicians working together to promote patient-centered comparative effectiveness research, discuss these interrelated challenges in the context of sleep apnea, and the role patients and patient-centered networks may play in informing evidence-based research designed to meet patient's needs. We first briefly discuss the challenges facing sleep medicine associated with costs, outcomes, and value. We then discuss the key role patients and patient-centered networks can play in efforts to design research to guide better sleep health care, and national support for such initiatives. Finally, we summarize some of the challenges in moving to a new paradigm of patient-researcher-clinician partnerships. By forging strong partnerships among patients, clinicians and researchers, networks such as SAPCON can serve as a living demonstration of how to achieve value in health care.