111 6. Did anything change about the severity of your CKD? Can you explain what that means for you? 7. Did anything change in your treatment? Can you tell how this was discussed with your health care professional and if you encountered any problems? 8. Did you learn new things about your CKD or the treatment? 9. Did you change anything in how you talk with others, both health care professionals and the people close to you, about your CKD or the treatment? Do you do things differently in consultations? 10. If you were the boss of your general practice or the nephrology department, what would you do to improve care for patients with CKD? Supplementary file 3 Final main- and subthemes, codes and descriptions derived from the data analysis of the interviews with patients with limited health literacy Patient theme 1: CKD elusiveness Unawareness / Lack of symptoms Belated CKD diagnosis CKD was not checked/mentioned by HCPs or diagnosed late Lack of symptoms Patients do not experience noticeable symptoms of CKD Belated awareness Often patients became aware late after serious warnings/signs CKD is a value from the lab Patients do not perceive CKD as an illness but just as lab result Limited sense of urgency CKD discussed insufficiently Especially in GPs CKD is discussed marginally in consultations CKD is not so serious Patients perceive CKD as a non-serious problem Keeping distance / denial Patients tend to keep ‘being ill’ at a distance or deny it Many people have it Since many people have some kidney damage it can’t be bad Influence of co-morbidities Patients prioritize (self-management of) other diseases over CKD General view on CKD Patients state that others perceive CKD as a mild problem Patient theme 2: Suboptimal uptake of knowledge Patients’ barriers Reading problems Patients lack abilities to read written information Language problems Patients do not speak Dutch very well which is problematic Overwhelmed Severe illness or the amount of information is overwhelming Not understanding causation Patients have problems to see caustions between, for example, lab values and being ill, other diseases and (onset of) CKD etc. Not asking questions Patients do not always ask questions to the HCPs if needed Not seeking clarification If patients don’t understand, they do not always clarify that Not using other sources The use of the Internet or other sources to seek information Memory problems Information is understood, but not remembered after some time Openness for information Patients are not always open to receive information from HCPs, for example when stressed
RkJQdWJsaXNoZXIy MTk4NDMw