Readability in printed education materials for Chinese patients with systemic lupus erythematosus: a mixed-method design

Abstract

ObjectivesTo assess the readability of printed education materials (PEMs) for patients with systemic lupus erythematosus (SLE) and to explore the perceptions of patients with SLE with different health literacy regarding the readability of PEMs.DesignA mixed-methods study, including a cross-sectional survey and semistructured interviews.SettingThe SLE PEMs were collected from 13 hospitals in China. The interviews were conducted in the Department of Rheumatology of a hospital in Hefei, China.ParticipantsIn the cross-sectional survey, convenience sampling was used to select the Chinese SLE PEMs, with 20 PEMs included. In the qualitative study, the patients with SLE were divided into two groups based on their health literacy. Then, purposive sampling was used to select participants in each group, with 18 patients recruited.Outcome measuresThe readability of PEMs was assessed by the language analysis technology and the Chinese version of the Suitability Assessment of Materials (SAM-C) instrument.ResultsFor text factors of readability, the mean Chinese language difficulty coefficient was 67.09±8.03, which indicates that the text of PEMs was difficult to read. For non-text factors, the mean SAM-C score was 45.62±9.51. Eight PEMs were rated not suitable, 12 were adequate and none were superior. In the interviews, eight categories were identified: information source, content, actionability, plain language, pictures, tables, numbers and layout. Patients with different health literacy had discrepant views on the detail of basic information, the necessity of question list, the location of functional pictures and the application of mathematical symbols.ConclusionsThe readability of Chinese SLE PEMs does not perform well, and it is necessary to reduce the difficulty of words, shorten the length of sentences and improve the picture design and actionability. To develop PEMs tailored to patients’ level of health literacy, patients’ unique view of readability should be integrated into the design of PEMs.

Evaluating the readability, quality and reliability of online information on Behçet’s disease

“…As a result, it is critical that health-related material on websites be appropriate for the reader and thoroughly assessed before being used. There have been numerous studies published in the literature on the readability, reliability, and quality of online information in various disorders (10)(11)(12)(13).…”

Application of the Knowledge, Attitude, and Practice model combined with motivational interviewing for health education in female patients with systemic lupus erythematosus

“…Over time, the patients in the observation group perceived differences between their own disease information and needs during the original intervention and follow-up, and the information and understanding methods they could obtain from the manual changed. [ 4 ] According to the expression of information acquisition and the results of this item in the third month of follow-up in the observation group, the patients in the observation group were interested in their own diseases and rehabilitation content in the short-term intervention. The KAP model combined with MI health education can help patients enhance their motivation for change and self-efficacy and effectively adjust their lifestyle with the knowledge they have mastered.…”

“…[2,3] A survey on medication adherence in 144 patients with SLE has revealed that although 43.1% of patients were compliant, their long-term compliance reduces over time after the disease becomes stable. [4] Although female patients had better pathogenesis and outcomes than male patients, they have worse negative emotional events such as disease cognition, anxiety, depression, and fatigue, and are more vulnerable to SLE affecting health behavior. [5][6][7][8] Lower health literacy was associated with worse patient-reported outcomes and higher disease activity in patients with SLE, especially in women.…”

The Systemic Lupus Erythematosus Interventional Trials in Mainland China: A Continuous Challenge

“…However, interventional RCTs in mainland China focus on pharmacologic and biologic treatments, while the absence of interventions involving self-management, diet, education, exercise, and care reflects ignorance of the importance of comprehensive management for SLE patients among physicians in mainland China. Even in clinical practice, the importance of education and self-management of patients has been largely underestimated in mainland China ( 23 – 25 ), and it is necessary for researchers to explore localized nonpharmaceutical interventions in terms of nursing, education, and patient self-management. Based on that, coordinated efforts of physicians to establish a comprehensive and efficient clinical patient management system would support medication adherence, save medical resources, and help patients control their diseases.…”