Marco Boonstra

86 DISCUSSION Our study yielded several barriers that influence self-management of CKD patients with LHL. Patients lack awareness and have suboptimal knowledge about CKD, which affects self-management, especially in primary care. Patients also mentioned problems to take a front-seat role in self-management and to maintain behaviour change. Additionally, HCPs experienced problems to identify and support LHL patients and mentioned barriers in the health care system that potentially disadvantage patients with LHL. We identified strategies to optimize competencies of patients with LHL and of the HCPs who support them. Both GPs and patients reported information on CKD self-management to be scarce, leading to unawareness and suboptimal knowledge. These findings align with other studies, showing that GPs discuss CKD insufficiently[27,49], many patients have limited CKD awareness and knowledge[50–52], and LHL is hindering consultations and self-management[12,53–55]. Our findings provide insight in the underlying reasons. Patients point out that discussing CKD lab values is not enough to make them aware of having a disease. They did not receive much information on self-management, and struggled to derive meaning from the consultations. GPs explained the consultation is often about diabetes and cardiovascular risks, but less about CKD. These findings call for earlier education on CKD and its risk factors to overcome patients’ lacking awareness and knowledge. Patients mentioned barriers to take a front-seat role and maintain selfmanagement on the long-term, such as negative emotions, not seeing risks, missing rewards, and leaving the responsibility with others. This confirms previous findings, e.g. that many CKD patients have problems to accept and act on their CKD diagnosis and that adherence on the long-term is negatively influenced by LHL, conflicting treatment regimens for co-morbid diseases, and age[24,44,56]. Since LHL is associated with worse self-management[9,13,14] and psychological problems[3], we hypothesize these barriers are prominent among people with LHL. Our study helps to understand. First, we show that HCPs often respond to self-management barriers by educating patients on expected behaviours. That may be hardly effective, as addressing the experienced barriers is a precondition to be open for information from HCPs[57]. Second, patients reported problems

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