Abstract

There is currently no comprehensive tool to assess the functional health literacy (HL) skills of chronic airway disease (CAD) patients. The purpose of this article is to describe the development of a new HL measure, the Vancouver Airways Health Literacy Tool (VAHLT). The tool was developed through the following phases: (1) Tool conceptualization, consisting of: (A) a systematic review (SR), (B) focus group sessions with CAD patients to understand barriers and facilitators to CAD management, (C) a survey with key-informants to obtain strategies to mitigate self-management barriers and validate patient-derived topics, and (D) respiratory physicians’ review of the topics; (2) Scenario and item development; and (3) Tool testing and content validation. The SR identified the lack of a valid HL measurement tool for CAD patients. Patients provided an initial shortlist of disease-related self-care topics. Key-informants helped to finalize topics for inclusion. Respiratory physicians and patients contributed to the development of a scenario-based questionnaire, which was refined during three rounds of testing to develop a 44-item instrument comprising nine self-management passages. We highlight the holistic process of integrating information from the literature with knowledge gained from key stakeholders into our tool framework. Our approach to stakeholder engagement may be of interest to researchers developing similar tools, and could facilitate the development and testing of HL-based interventions to ultimately improve patient outcomes and reduce the burden on the healthcare system.

Highlights

  • Health literacy (HL) is defined by the Canadian Expert Panel on HL (CEPHL) [1]and Calgary Charter on HL (CCHL) [2] as having five core domains encompassing “an individual’s capability to access, understand, communicate, evaluate, and use health information and care services to make informed decisions for one’s health and well-being”.Numeracy is considered to be a HL skill [3]; it is typically assessed across the HL domains, rather than as an independent entity [4]

  • Low HL is associated with poor health outcomes and excess healthcare spending in a variety of chronic health conditions [8,9], including asthma and COPD, the two main chronic airway diseases (CAD) [10,11,12,13,14]

  • The key findings pertaining to our tool development were: (1) the five core HL domains outlined by the CCHL [1,52] were underrepresented among the tools; (2) overreliance on the “understand” HL domain was common, indicating the potential misuse of word comprehension as a proxy for HL skills; and (3) use of a self-evaluative design as the dominant approach, meaning patients were assessed based on the indication of their perceived level of competence to act in a given health scenario, as opposed to completing the task whilst displaying their functional HL skills

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Summary

Introduction

Health literacy (HL) is defined by the Canadian Expert Panel on HL (CEPHL) [1]and Calgary Charter on HL (CCHL) [2] as having five core domains encompassing “an individual’s capability to access, understand, communicate, evaluate, and use health information and care services to make informed decisions for one’s health and well-being”.Numeracy is considered to be a HL skill [3]; it is typically assessed across the HL domains, rather than as an independent entity [4]. In Canada, over 60% of the adult population (≥16 years of age) and 88% of seniors (>65 years of age) have insufficient abilities to manage their health or make informed health-related decisions [5,6,7]. Low HL is associated with poor health outcomes and excess healthcare spending in a variety of chronic health conditions [8,9], including asthma and COPD, the two main chronic airway diseases (CAD) [10,11,12,13,14]. HL challenges in CAD management are associated with unnecessary hospitalizations and emergency department visits [15,16], reduced medication adherence [17,18], Int. J.

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