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

Abstract

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.

Low Health Literacy Is Associated with Poorer Physical and Mental Health-Related Quality of Life in Dialysed Patients

“…A further idea could be to help patients with lower HL in understanding health information, to verify their understanding repeatedly, and to support them in expressing their doubts about treatment or other related problems regarding self-management, taking medication, diet, and coping with the consequences of the disease [ 52 ]. Research has shown that this can be effectively carried out using visual strategies, and by supporting rather individual discussions than group discussion of needs and barriers [ 53 ]. Finally, a promising way to tackle the impact of low HL on HRQoL is to focus on intermediate factors between HL and HRQoL such as smoking [ 54 ].…”

What Are the Best Practices for Co-Creating Patient-Facing Educational Materials? A Scoping Review of the Literature

“…Identified articles were published between 2007 and 2022, and 33/44 (75%) of papers were published since 2017, reflecting that co-creation is a relatively recent adoption in patient education (Figure 2) [9][10][11][12][13][14][15][16][17][18]20,21,[23][24][25][26][27][28]31,34,[36][37][38]40,41,[43][44][45][46][47][48][49][50]. Three-quarters of papers were from anglophone countries-United States: n = 17 [8,9,17,19,20,22,25,27,[31][32][33][34]36,42,47,49,…”

Towards tailored medication self-management

“…Self-management support changes and expands the role of healthcare professionals from delivering information and traditional patient education to helping patients build confidence and make choices that lead to improved self-management and better outcomes. 75 A large variety exists in the form, content, and goals of existing self-management support interventions. For example, support is provided through patient education, reminders, medication adherence counseling, telephone-based counseling providers, decision aids, and individualtailored prescription labels with instructions for medication.…”

“…This would require co-creation with patients with limited health literacy. 15,74,75 For people without Internet access, a different strategy is required to support them in their medication self-management.…”

“…This method was used in the study described in Chapter 5. 74,75 They may not be experts in the field of medication, but they could, for example, educate and support digital skills. Improving digital skills is useful for improving access to health information, and it may also be used for other sectors of society.…”