Health Literacy and Type 1 Diabetes Mellitus: A Mixed Method Study

The increasing prevalence of type 1 diabetes underscores the need for health literacy responsiveness, as effective self-management depends on understanding and using health information. The Ophelia process supports identifying diverse strengths and needs among people with type 1 diabetes.

To systematically identify health literacy strengths, needs, and preferences among individuals with type 1 diabetes attending specialized outpatient care using a mixed methods approach guided by phase 1, step 1 and 2 of the Ophelia process.

Adults (≥18 years) with type 1 diabetes or subtypes (MODY/LADA) at a Danish specialist diabetes center were invited to complete a survey including the Health Literacy Questionnaire (HLQ) and three scales from the electronic HLQ (eHLQ). Cluster analysis and in-depth interview were integrated for the development of representative vignettes.

Of 1,193 eligible patients, 238 participated (response rate 19.9%). The mean age was 54.2 years and 52% were men. HLQ and eHLQ scores revealed a wide diversity in health literacy strengths and needs. Health literacy profiles ranged from higher health literacy with active self-management to lower health literacy with low engagement and high reliance on family support. Vignettes vividly illustrated archetypal patient experiences, supporting a tailored understanding of health literacy challenges in clinical practice.

Seven distinct health literacy profiles were identified among adults with type 1 diabetes, showing significant variation in health literacy and low health literacy among nearly one fifth, with difficulties navigating the health care system being common. The findings underscore the necessity of developing tailored, person-centered, and health literacy responsive interventions to strengthen diabetes self-management and advance equity in health care access.