Table 4

Categories and subcategories with example quotations

Categories and subcategoriesQuotations‡
Information source‘When the doctor told me I got sick, I looked for information about SLE on the Internet.’ (Age: 27)
‘I will trust the information on the Internet if it matches the messages from doctors. When I open a website with many advertisements, I will skip it.’ (Age: 39)
‘I believe the messages from Baidupedia, because this website indicates which expert wrote this information, and I think it is authoritative.’ (Age: 39)
‘I expect the hospital can offer the printed materials because they are more comprehensive and reliable compared with the Internet.’ (Age: 37)
Summary* (Summary or review included)‘There is so much in each chapter that I don’t know what to look at. It is better to have a summary of each chapter. If I am busy, I can only read the summaries to get the key points.’ (Age: 44)
Contradictory information†‘I think there are some contradictions between the two materials. The first material says we can’t eat celery, and the second one says we can eat less in the evening. It makes me feel confused. You should confirm the authenticity of these messages and tell us the information sources.’ (Age: 51)
Content topics†‘I want each part to be described in detail. Some basic medical knowledge, such as the cause and classification of disease, also needs to be explained because it can help me understand my disease, and I need to understand my health comprehensively.’ (Age: 30, high health literacy)
‘I’m concerned that the solutions for current symptoms and medical knowledge can be briefly summarised.’(Age: 54, low health literacy)
Behavioural information* (Behaviours are modelled and specific)‘The plan of action is so sketchy that I do not know how to carry it out. You should tell me more detailed steps on how to manage myself. For example, according to the different stages of SLE, what kind of exercise is suitable for me and how long?’ (Age: 50)
Case introduction†‘I like this form of case description. It was interesting and close to life. You can tell a story of a SLE patient, such as her disease process, treatment, and daily management.’(Age: 37)
Symptom recording software†‘Paper forms record information, which is troublesome and easy to lose. I suggest creating a symptom recording app instead of the paper forms. It is good for preserving data and protecting privacy.’ (Age: 20)
List of questions†‘I don’t think it’s necessary to list these questions. I know what I should ask when I visit the doctors.’ (Age: 37, high health literacy)
‘These questions give me some hints about what information is important. However, I don’t think I can use them during the follow-up visit. Because the doctors are very busy, they don’t have time to answer so many questions.’ (Age: 51, low health literacy)
Plain language
Medical terms*‘I can’t understand these medical terms and English abbreviations. You need to explain them or replace them with common words.’ (Age: 30)
Complicated sentences*‘Several sentences here all have the same meaning, which is too verbose. I suggest to combine them into a sentence with terse language.’ (Age: 44)
Functional pictures†‘The written description of clinical manifestations is too abstract. Add some real photos on the side, and I can compare my symptoms with these photos. There is no need to add pictures in the daily management because these topics are easy to understand, and the purpose of pictures is to visualise text.’ (Age: 39, high health literacy)
‘You need to add some pictures to illustrate how to exercise and some text description. I don’t have much patience to read so many words, but pictorial information can increase reading interest.’ (Age: 57, low health literacy)
Decorative pictures†‘You can make the layout look better by adding some pictures of flowers and plants, and I will feel pleasure during reading.’ (Age: 32)
Explanations and directions* (Lists and tables explained)‘I can’t use this table (SLEDAI-2000) independently because I don’t know what it is and how it works. If you want me to use it, you must write the steps clearly. What’s the first step and the next step? ’ (Age: 51)
Numerical information†‘I like these specific numbers, which make me feel convinced.’ (Age: 32)
Mathematical symbols†‘I can understand common mathematical symbols.’ (Age: 27, high health literacy)
‘I don’t understand what this symbol (%) means. You should use words or pictures to explain it.’ (Age: 30, low health literacy)
Marking symbol* (Layout factors)
Division* (Motivation)
‘I can’t find the information I need because there is no marker to demonstrate what is important. I think these markers are necessary to help me remember the knowledge.’ (Age: 27)
Word-spacing* (Layout factors)
Font size* (Typography)
‘The layout is too compact, and I need glasses to read clearly. It is better to divide the long texts into parts, increase the word spacing and line spacing, and use a large font size.’ (Age: 60)
  • *Subcategory is consistent with the evaluation result of text factor or the item in the SAM-C presented in the parentheses below.

  • †Subcategory is inconsistent or complementary with the item in the SAM-C.

  • ‡Only the quotations, which belonged to the subcategories that participants with different health literacy had different perceptions, were marked by high or low health literacy.

  • SAM-C, Suitability Assessment of Materials.