Abstract Background For young people living with a chronic illness (such as rheumatic diseases), transitioning from youth to adult care is a challenging process requiring adequate health literacy (HL). Insight into the specific HL-challenges of young people with rheumatic diseases could contribute to preventing loss to follow-up, and improving medication adherence, health outcomes, and social participation. Methods A mixed-methods study was conducted among young adults (16-25 years old) living with rheumatic disease in the Netherlands. Participants were recruited at two clinics and through social media of patient initiatives. Quantitative data were digitally self-reported using the Health Literacy Questionnaire (HLQ) and Medication Adherence Report Scale (MARS). Qualitative data were collected through semi-structured interviews. Hierarchical cluster analysis of HLQ-data was used to identify health literacy profiles, uncovering strengths and weaknesses. Interview transcripts were analysed using content analysis and used to explore health literacy needs and confirm the HLQ results. Results Sixty-two participants completed the questionnaire and ten participants were interviewed. Six HL-profiles were identified, representing diverse strengths and weaknesses. Having sufficient information, social support, and critical appraisal were challenging across profiles. Some participants (particularly in profile 3) reported difficulties in taking medication. The interviews confirmed the quantitative findings and unveiled HL needs across seven categories, particularly the need for in-depth information and support, with a focus on (social) aspects of having a chronic illness as a young person. Conclusions HL-challenges of young adults with rheumatic diseases are similar to adult populations, but age-specific needs exist. The results can inform development of HL-responsive rheumatology services, for example during consultations or at the transition clinic.
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