Marco Boonstra

151 SUPPLEMENTARY FILES Identified barriers for self-management Proposed solution Patients with mild to moderate CKD1 are often unaware of the existence and seriousness of their disease. HCPs2 pay limited attention to CKD and mainly explain it as ‘a value from the lab’ without teaching self-management skills. Improve CKD awareness in patients with mild to moderate CKD. Patients lack knowledge regarding CKD and self-management and competences to retrieve information from documents or consultations. HCPs mainly provide information orally or written, which is not always comprehensible, and do not consistently check the patient’s understanding of the disease and treatment. Provide simple and visually attractive information and check patient understanding Patients struggle to translate HCP’s advices into daily life self-management. HCPs overestimate patients, focus too much on medical theory and the aims of treatment, without providing actionable information. Provide practical step-wise guidance to facilitate selfmanagement. Patients see few or only short-term health benefits of self-management. They have problems to see why self-management is important. HCPs often motivate patients by emphasizing the importance of ‘being healthy’, while for patients life aims seem more important as the kidneys will never get better. Motivate patients by using life aims and explaining the benefits of self-management better. Patients mention barriers to maintain self-management on the long-term. They often attempt to change, but fail to persist when advises are unfeasible, they feel depressed or stressed, notice the kidneys are still declining, or fall for unhealthy food or habits. HCPs pay limited attention to these long-term self-management barriers. Support patients to overcome long-term self-management barriers. Patients mention the social network is important to start and maintain selfmanagement. HCPs state the social network can either support or counteract self-management. Involvement of the network in the treatment is often insufficient. Involve the social network to support the patient. Patients and HCPs mention how strategies to improve self-management do not always meet the patient’s needs. HCPs mention that they have problems to recognize HL3 problems and to truly understand barriers of patients with LHL4. Train the professional to recognize and support patients with LHL. The stated barriers and proposed solutions above were synthesized from in-depth interviews with CKD patients with LHL (n=24) and focus group discussions and interviews with HCPs (n=37) and are in the result section of our previous longitudinal, qualitative study[16]. We included them here as well, as they are the starting point of our intervention development. 1 CKD = chronic kidney disease, 2 HCP = health care professional, 3 HL = health literacy, 4 LHL = limited health literacy. Determinants Quotations for patient interviews# Patients are aware of having kidney problems HCPs know strategies to create CKD awareness in patients with LHL ‘I am or was not aware of having kidney problems’ Patients understand (symptoms of) CKD Patients know what the risks are, when they develop more severe CKD Patients ask clarification from the HCP if needed HCPs inform CKD patients in simple language and with visual strategies HCPs check the CKD patients’ understanding ‘I understand my CKD’ ‘I doubt if it is dangerous when my kidney problems worsen’ ‘I find it difficult to ask for clarification’ ‘The explanation of the HCP can be too difficult’ Patients are intrinsically motivated to self-manage their disease and treatment Patients share their personal needs regarding selfmanagement with HCPs HCPs apply shared-decision making to decide on aims and self-management ‘I don’t know what I will gain with lifestyle or medication’ ‘I don’t know exactly what is important to tell the HCP’ ‘It is mainly the HCP telling me what I need to do to protect my kidneys. I will not speak up if I have other thoughts’ Supplementary file 1: Identified barriers and proposed solutions to optimize self-management of CKD patients with LHL Supplementary file 2. Quotations, derived from the determinants, which we discussed with patients.

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