A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: Perspectives of patients and health care professionals.

OBJECTIVES: Limited health literacy (LHL) is associated with faster kidney deterioration. Health care professionals (HCPs) promote self-management to maintain kidney function, which is difficult for patients with LHL. Evidence lacks on perceived barriers and best strategies to optimize their self-management. Our study aims to explore experiences with and barriers for self-management from the perspectives of LHL patients and HCPs to identify strategies to optimize self-management. METHODS: We performed a longitudinal qualitative study with semi-structured in-depth interviews and focus group discussions among CKD patients and LHL (n = 24) and HCPs (n = 37) from general practices and hospitals. RESULTS: Four themes arose among patients: (1) CKD elusiveness, (2) suboptimal intake of knowledge (3) not taking a front-seat role, and (4) maintaining change. Among HCPs, three themes emerged: (1) not recognizing HL problems, (2) lacking effective strategies, and (3) health care barriers. CONCLUSION: We suggest three routes to optimize self-management: providing earlier information, applying person-centered strategies to maintain changes, and improving competencies of HCPs. PRACTICE IMPLICATIONS: HCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioral approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.

Co-Creation of a Multi-Component Health Literacy Intervention Targeting Both Patients with Mild to Severe Chronic Kidney Disease and Health Care Professionals.

Limited health literacy (LHL) is common in chronic kidney disease (CKD) patients and frequently associated with worse self-management. Multi-component interventions targeted at patients and healthcare professionals (HCPs) are recommended, but evidence is limited. Therefore, this study aims to determine the objectives and strategies of such an intervention, and to develop, produce and evaluate it. For this purpose, we included CKD patients with LHL (n = 19), HCPs (n = 15), educators (n = 3) and students (n = 4) from general practices, nephrology clinics and universities in an Intervention Mapping (IM) process. The determined intervention objectives especially address the patients' competences in maintaining self-management in the long term, and communication competences of patients and HCPs. Patients preferred visual strategies and strategies supporting discussion of needs and barriers during consultations to written and digital strategies. Moreover, they preferred an individual approach to group meetings. We produced a four-component intervention, consisting of a visually attractive website and topic-based brochures, consultation cards for patients, and training on LHL for HCPs. Evaluation revealed that the intervention was useful, comprehensible and fitting for patients' needs. Healthcare organizations need to use visual strategies more in patient education, be careful with digitalization and group meetings, and train HCPs to improve care for patients with LHL. Large-scale research on the effectiveness of similar HL interventions is needed.

Food Literacy Is Associated With Adherence to a Mediterranean-Style Diet in Kidney Transplant Recipients.

OBJECTIVES: Adherence to a Mediterranean-style diet is associated with improved health outcomes in kidney transplant recipients (KTR). However, poor dietary habits, including excessive sodium intake, are common in KTR, indicating difficulties with incorporating a healthy diet into daily life. Food literacy is identified as potential facilitator of a healthy diet, but the precise relationship between food literacy and dietary intake in KTR has not been investigated. This study examined food literacy levels in KTR and its association with adherence to a Mediterranean-style diet and sodium intake. METHODS: This cross-sectional study is part of the TransplantLines Cohort and Biobank Study. Food literacy was measured with the Self-Perceived Food Literacy (SPFL) questionnaire. Dietary intake assessment with food frequency questionnaires was used to calculate the Mediterranean Diet Score. Sodium intake was based on the 24-hour urinary sodium excretion rate. Associations of SPFL with Mediterranean Diet Score and sodium intake were assessed with univariable and multivariable linear regression analyses. RESULTS: In total, 148 KTR (age 56 [48-66]; 56% male) completed the SPFL questionnaire with a mean SPFL score of 3.63 ± 0.44. Higher SPFL was associated with a higher Mediterranean Diet Score in KTR (ß = 1.51, 95% confidence interval 0.88-2.12, P ≤ .001). Although KTR with higher food literacy tended to have a lower sodium intake than those with lower food literacy (P = .08), the association of food literacy with sodium intake was not significant in a multivariable regression analysis (ß = 0.52 per 10 mmol/24-hour increment, 95% confidence interval -1.79 to 2.83, P = .66). CONCLUSIONS: Higher levels of food literacy are associated with better adherence to a Mediterranean-style diet in KTR. No association between food literacy and sodium intake was found. Further studies are needed to determine if interventions on improving food literacy contribute to a healthier diet and better long-term outcomes in KTR.

How to tackle health literacy problems in chronic kidney disease patients? A systematic review to identify promising intervention targets and strategies.

BACKGROUND: Limited health literacy (LHL) is associated with multiple adverse health outcomes in chronic kidney disease (CKD). Interventions are needed to improve this situation, but evidence on intervention targets and strategies is lacking. This systematic review aims to identify potential targets and strategies by summarizing the evidence on: (i) patient- and system-level factors potentially mediating the relation between LHL and health outcomes; and (ii) the effectiveness of health literacy interventions customized to CKD patients. METHODS: We performed a systematic review of peer-reviewed research articles in Medline, Embase and Web of Science, 2009-19. We assessed the quality of the studies and conducted a best-evidence synthesis. RESULTS: We identified 860 publications and included 48 studies. Most studies were of low quality (n = 26) and focused on dialysis and transplantation (n = 38). We found strong evidence for an association of LHL with smoking and having a suboptimal transplantation process. Evidence was weak for associations between LHL and a variety of factors related to self-care management (n = 25), utilization of care (n = 23), patient-provider interaction (n = 8) and social context (n = 5). Six interventions were aimed at improving knowledge, decision-making and health behaviours, but evidence for their effectiveness was weak. CONCLUSIONS: Study heterogeneity, low quality and focus on kidney failure largely impede the identification of intervention targets and strategies for LHL. More and higher quality studies in earlier CKD stages are needed to unravel how LHL leads to worse health outcomes, and to identify targets and strategies to prevent disease deterioration. Healthcare organizations need to develop and evaluate efforts to support LHL patients.