Health literacy: more than the understanding and processing of health information

Background: Health literacy HL skills are a prerequisite for successful self-management of chronic diseases. Traditionally, there is a strong emphasis on the functional and cognitive HL skills that people need, also reflected in HL measurement tools and interventions developed to improve HL. However, for successful self-management, these skills are not enough.  People also need skills to communicate, assert and enact self-management decisions. People with strong functional and cognitive HL skills do not automatically possess this capacity to act. How and to what extent the capacity to understand and the capacity to act are interrelated is an important question. Insight into this question and how and why it differs among people is important to better tailor self-management support to the specific needs and skills of patients.

Method: In 2017, we assessed  the functional and cognitive HL skills capacity to understand and the capacity to act in a representative Dutch sample of chronic disease patients n= > 2000,  using the HLS-EU questionnaire and the Patient Activation Measure PAM respectively. Based on their scores on these two measures patients were clustered into four groups scoring either high or low on both capacities. In a next step, profiles of these four groups were made based on demographic and disease-related variables, health care needs and aspects of self-management

Results: Four distinct patient groups could be distinguished based on their capacity to understand and act. These groups differed according to personal and social circumstances and with respect to their health care needs and their ability to self-manage. Especially, groups scoring low on the ability to act had higher health care needs and were less succesfull in self-management. In addition, they, in general, were more vulnerable both personally and socially.

Conclusions: There often is a discrepancy between the amount of functional and cognitive HL skills people have and their ability to act. Therefore, both type of skills should be taken into account when measuring HL. Functional and cognitive skills are important but not sufficient for successful self-management. The ability to act is an additional important prerequisite. The capacity to act depends on the personal and social circumstances of people. These circumstances should be taken into account, asking for an integrated approach when supporting self-management.

Lessons learned: This study contributes to the further conceptualization of HL and evidence for the necessity of including non-cognitive aspects such as motivational/skills training when developing interventions to support self-management. At the same time it stresses the importance of the individual and social context for the capacity to understand and act. People with less skills are often vulnerable in other social domains. When supporting self-management this context should therefore be taken into account.