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Involvement of Patients and Professionals in the Development and Pretesting of an Asthma/Chronic Obstructive Pulmonary Disease (COPD) Health Literacy (HL) Measurement Tool: A Canadian Approach
Health literacy (HL) assessment tools are often developed in the absence of patients’ engagement, which limits ability to assess their HL skills. Moreover, the topic of HL in airway diseases, especially asthma and chronic obstructive pulmonary disease (COPD), are still relatively underdeveloped. We involved asthma/COPD patients as well as key-informants (e.g., health care professionals, HL researchers, and policymakers) in identifying the possible themes and items for conceptualizing a HL assessment tool for asthma/COPD management. A systematic review on existing HL measurement tools was conducted along with patient focus group sessions and key-informant interviews. Perspectives on the main HL domains were identified in regard to airway disease management practices and applied in the development of a preliminary version of a functional-based assessment tool. Next, the tool was reviewed by patients and key-informants for the relevancy and practical application. The modified draft was then pre-tested with a new group of asthma and COPD patients to assess the difficulty, clarity, and relevance of the tool as related to their routine disease management practices. Application of the end-users’ (patients and professionals) viewpoints helped our research team to not only develop the proposed HL assessment tool but also a conceptual model aiming to assess the link between HL levels and disease outcomes.
- To understand patients’, key informants’, and other researchers’ perspectives and experiences on airway disease management and their association with the main HL domains
- To identify the potential topics and items of asthma/COPD disease management practices and how it can be incorporated into a functional-based assessment tool measuring the HL of the target population