Asthma and COPD patients’ perceived link between health literacy core domains and self-management of their condition

•Patients perceived challenges in self-managing their chronic lung conditions.•Access is classified: passive access, active access, and lack of access.•Usefulness and truthfulness of information is categorised: pre-use and post-use evaluation.•Acquired knowledge informed development of a function-based HL. Health literacy (HL) is a person’s ability to practically apply a wide range of cognitive and non-cognitive skills, to make health-related decisions. Currently, no tool applies all HL core domains to capture necessary data to measures HL in adult asthma and COPD patients. We endeavored to develop a comprehensive, function-based tool that adequately and accurately measures HL skills of this patient population. We explored the perspectives of patients related to each core HL domain, with an emphasis on self-management practices. Sixteen focus groups were conducted (n = 93; 40 asthma and 53 COPD) across Canada. Data was analyzed using NVivo12. Thirteen subthemes were identified within five HL domains: (a) access: active access; passive access; lack of access; (b) understanding: how to improve understanding; (c) trustworthiness; relevancy and validity of information: pre- and post- application of information; (d) communication: barriers to proper communication; (e) application of information: making health decisions. Participants provided valuable insight in terms of disease management topics and corresponding items to include in our HL tool. Involvement of patients from initial stage allowed us to develop a tool that will serve as a first ever developed HL tool for asthma and COPD patient group.