Health literacy in patients with Chronic kidney disease
Health literacy (HL) concerns an individual’s ability and motivation to gain access to, understand, and use health information. Patients suffering from chronic kidney disease (CKD) are at risk of developing severe, life- threatening complications, and experiencing progression of the disease towards end-stage renal disease (ESRD) with the need for renal replacement therapy (RRT). Day-to-day decisions about how to self- manage their disease may affect patients’ risk of complications and the progression of CKD. Adequate HL is seen as a prerequisite for sound health behaviour and desired health outcomes; however, earlier research has mostly assessed HL with one-dimensional assessment tools, evaluating individuals’ health-related reading- or numeracy skills. Over the years, the concept of HL has evolved to become a broader concept including more dimensions such as social support, interactive dimensions, and the accessibility of healthcare services. Consequently, there is a knowledge gap that needs to be filled.
The aim of this thesis was to explore HL in CKD patients.
The thesis reports three studies with equal status. In studies Ⅰ and Ⅱ, a descriptive, cross-sectional design with patient-reported outcome measures (PROMs) and data from medical records was used to assess and identify possible associations between HL, demographic and clinical variables, quality of life (QoL) and adherence to long-term therapy. HL was evaluated with a multidimensional tool, the Health Literacy Questionnaire (HLQ). Study Ⅲ was qualitative, in which in-depth interviews were used to explore patients’ experiences of different aspects of HL for a better understanding of their needs.
One hundred eighty-seven patients were included in the cross-sectional studies (Ⅰ and Ⅱ); the patients had a mean age (SD) of 67 years (13), and 65% were males. Of the included patients, 80 had CKD stage 3, 81 had CKD stage 4-5 and were not on dialysis, and 26 patients received haemodialysis.
Twelve patients from the cross-sectional studies (presented in papers Ⅰ and Ⅱ) were included in the qualitative study (presented in paper Ⅲ).
Study Ⅰ: We found that the critical appraisal of health information and the ability to find good health information were the most challenging dimensions of HL for the patients, whereas feeling understood and supported by healthcare providers and the ability to actively engage with healthcare providers were the least challenging. Female gender, lower level of education, higher pill burden, and more depressive symptoms were associated with low HL. Using cluster analysis, we identified three groups of CKD patients, characterized by low, medium, and high levels of HL.
Study Ⅱ: We utilized the HLQ scores and the results from the cluster analysis in study Ⅰ, and found that CKD patients with lower HL had lower QoL than patients with higher HL. We also found that the ability to understand health information was predictive of QoL, while the actively managing health, the ability to actively engage with healthcare providers, and the ability to find good health information were predictive of adherence to long-term therapy.
Study Ⅲ: The thematic analysis of the interviews resulted in tree main themes that describe the patients’ HL experiences; 1. Diversity in the role as a health information seeker, 2. Fragmented healthcare system, a challenge for navigating, and, 3. The value of a good relationship with healthcare providers.
This thesis provides insight into HL in CKD patients. There are significant HL inequalities in patients with CKD. Based on the cross- sectional studies (papers Ⅰ and Ⅱ), strategies to improve HL could focus on developing guidance for finding good health information and methods for the critical appraisal of health information. Strategies to improve QoL and adherence to lifestyle recommendations could focus on providing adapted and tailored information and establishing a good relationship between healthcare providers and patients.
The qualitative study, however, revealed more nuances of the picture of HL. Patients might avoid health information as a strategy to cope with CKD and not necessarily lack the ability to gain access to, understand or use health information. Strategies for increasing HL could therefore also focus on patients’ desires and motivation to be involved. Furthermore, a fragmented healthcare system is a barrier to patients’ navigation of the system and control of their health situations that might be modified through the establishment of a competent and trusting relationship between patients and healthcare providers.