A New Method to Measure Health Literacy


Study Title: Development and Validation of a Canadian Health Literacy (HL) Measurement Tool for Chronic Airways Disease Management

Principle Investigator: Dr. Mark Fitzgerald, Head of the UBC Respiratory Division and co-Director of UBC Institute for Heart and Lung

Co-Principal Investigator: Jacek Kopec, Senior Research Scientist, Arthritis Research Canada, Professor and Head, School of Population and Public Health, University of British Columbia

Project manager and co-investigator: Dr. Mohammad-Iraj Poureslami, Senior Health Evaluation Scientist, Faculty of Medicine, Respiratory Division, University of British Columbia

Start date: 2015

End date: 2022

Why did we do this research? Health Literacy (HL) is the degree to which individuals have the capacity to obtain, process, understand, and communicate basic health information and services needed to make appropriate health decisions. Low levels of HL have a strong impact on population health. Low HL is associated with:

• increased hospitalizations
• greater emergency care use
• poorer ability to take medications appropriately or follow disease treatment
• poorer ability to interpret labels and health messages
• poorer overall health status
• higher mortality

Health Literacy is crucial for people to make informed health-related decisions, especially for those managing chronic conditions like asthma and Chronic Obstructive Pulmonary Disease (COPD). This research aimed to create a new tool to check how well people can do different everyday activities, like shopping or cooking, when they have chronic respiratory conditions. The goal is to help these people take care of their chronic respiratory conditions more effectively.

What Did We Do? We took several steps to create this new health literacy tool. Initially, we conducted a thorough review to identify the drawbacks of existing health literacy tools. Next, we organized several focus group sessions involving asthma and COPD patients who spoke either French or English from different regions in Canada. We also held interviews with key informants, including policymakers, clinicians, health literacy researchers, and respiratory physicians from Canada and abroad. Finally, we assembled a global HL expert advisory board to share their knowledge and experiences with our researchers about this innovative HL measurement tool. This collaboration between scientific, practice, and policy informants helped us create a tool that covers nine essential chronic Airways self-management topics. We then engaged patients and their caregivers to help us develop scenarios and scripts of our HL tool that was then tested with patients and key informants across Canada, refining it based on their feedback to ensure it was relevant, clear, and appropriately challenging.

We also assessed the validity of our developed tool, the Vancouver Airways Health Literacy Tool (VAHLT), by exploring its relationship with patient characteristics in individuals with chronic airways disease (CAD) with 1000 CAD patients in BC and five other provinces in Canada.

Who Was Involved? We used a patient participatory approach that engaged French and English-speaking patients with the most commonly occurring respiratory diseases: COPD and asthma.

Co-Investigators Shawn Aaron, Céline Bergeron, Louis-Philippe Boulet, Jean Bourbeau, Roger S Goldstein, Samir Gupta, Nadia Ahmed Khan, Darcy Marciniuk, Laura Nimmon, Mohammad-Iraj Poureslami, Irving Rootman, Richard Sawatzky, Wan Tan

Who Funded This Research? Canadian Institutes of Health Research

Related Publications:

  • Poureslami, I., Hohn, R. E., Kopec, J. A., Sawatzky, R., Aaron, S. D., Gupta, S., Goldstein, R., Boulet, L. P., Tregobov, N., Shum, J., & Canadian Airways Health Literacy Study Group (2023). Evaluation of a New Performance-Based Health Literacy Measurement Tool for Individuals With Chronic Airways Disease. Respiratory care68(5), 638–648. https://doi.org/10.4187/respcare.10441
  • Poureslami, I., Kopec, J., Tregobov, N., Shum, J., Sawatzky, R., Hohn, R., & FitzGerald, J. M. (2021). An Integrated Framework to Conceptualize and Develop the Vancouver Airways Health Literacy Tool (VAHLT). International journal of environmental research and public health18(16), 8646. https://doi.org/10.3390/ijerph18168646
  • Poureslami, I., Shum, J., Kopec, J., Sawatzky, R., Gupta, S., Pakhale, S., Kassay, S., Starnes, K., Akhtar, A., FitzGerald, J. M., & Canadian Airways Health Literacy Study Group (2020). Development and Pretesting of a New Functional-Based Health Literacy Measurement Tool for Chronic Obstructive Pulmonary Disease (COPD) and Asthma Management. International journal of chronic obstructive pulmonary disease15, 613–625. https://doi.org/10.2147/COPD.S234418
  • Poureslami I, Rootman I, Pleasant A, FitzGerald JM. The emerging role of health literacy in chronic disease management: the response to a call for action in Canada. Popul Health Manag. 2016;19(4):230-1. doi: 10.1089/pop.2015.0163. https://pubmed.ncbi.nlm.nih.gov/26824428/
  • Poureslami I, Nimmon L, Rootman I, FitzGerald JM. Health literacy and chronic disease management: drawing from expert knowledge to set an agenda. Health Promotion Internation. 2016; 32(4):743-754. https://doi.org/10.1093/heapro/daw003
  • Shum J, Poureslami. I, Doyle-Waters. M, FitzGerald. JM. The application of health literacy measurement tools (collective or individual domains) in assessing chronic disease management: a systematic review protocol. Systematic Reviews, 2016; 5: 97: 1-8. https://doi.org/10.1186/s13643-016-0267-8
  • Wiebe D, FitzGerald JM, Shum J, Bayat S, Kwan B, Poureslami I. A Preliminary Framework for the Development of a Health Literacy Measurement Tool for Asthma and COPD. Chest, 2016. : http://dx.doi.org/10.1016/j.chest.2016.08.725
  • Shum. J, Poureslami. I, Wiebe. D, M. Doyle-Waters. M, Nimmon. L, FitzGerald. JM. Airway diseases and health literacy (HL) measurement tools: A systematic review to inform respiratory research and practice. Patient Education and Counseling. 2017; 101(4):596-618. https://www.sciencedirect.com/science/article/abs/pii/S0738399117305876
  • Poureslami I, Nimmon L, Rootman I, Fitzgerald MJ. Priorities for Action: Recommendations from an international roundtable on health literacy and chronic disease management. Health Promotion International, 2017; 32(4): 743–754. https://www.jstor.org/stable/48518995
  • Ven Der Hiede I, Poureslai I, Mitis W, Shum J, Rootman I, Fizgerald JM. Health literacy in chronic disease management: a matter of interaction. Journal of Clinical Epidemiology. 2018; 102: 134-138. https://www.sciencedirect.com/science/article/abs/pii/S0895435617309435
  • Poureslami I, Shum J, Goldstein R, Gupta S, Aaron S, Lavoie KL, Poirier C, FitzGerald JM. Asthma and COPD patients’ perceived link between health literacy core domains and self-management of their condition. Patient Educ Couns. 2020; 103(7): 1415-1421. doi: 10.1016/j.pec.2020.02.011. https://www.sciencedirect.com/science/article/abs/pii/S0738399120300586
  • Poureslami I, Shum J, Kopec J, Sawatzky R, Gupta S, Pakhale S, Kassay S, Kassie Starnes K, Akhtar A, FitzGerald JM. Development and Pretesting of a New Functional-Based Health Literacy Measurement Tool for Chronic Obstructive Pulmonary Disease (COPD) and Asthma Management. Int J Chron Obstruct Pulmon Disv. 2020:15 613–625. DOI: 10.2147/COPD.S234418 https://pubmed.ncbi.nlm.nih.gov/32256062/
  • Poureslami I, Tregobov N, Shum J, McMillan A, Akhtar A, Kassay S, Starnes K, Mahjoob M, FitzGerald JM. A conceptual model of functional health literacy to improve chronic airway disease outcomes. BMC Public Health. 2021; 21: 252-268 https://doi.org/10.1186/s12889-021-10313-x
  • Poureslami, I., Kopec, J., Tregobov, N., Shum, J., Sawatzky, R., Hohn, R., & FitzGerald, J. M. (2021). An integrated framework to conceptualize and develop the Vancouver airways health literacy tool (VAHLT). International Journal of Environmental Research and Public Health, 18(16), 8646. https://doi.org/10.3390/ijerph18168646
  • van der Heide, I., Poureslami, I., Shum, J., Goldstein, R., Gupta, S., Aaron, S, FitzGerald JM, & Canadian Airways Health Literacy Study Group. Factors affecting Health Literacy as related to Asthma and COPD management: Learning from patient and health care professional viewpoints. HLRP: Health Literacy Research and Practice, 2021; 5(3): e179-e193. https://doi.org/10.3928/24748307-20210526-01
  • Poureslami, I., R. Hohn, N. Tregobov, J. Shum, J. Kopec, R. Sawatzky, S. Aaron et al. “Psychometric Validation of a Functional-Based, Disease Specific Health Literacy Measurement Tool for Patients with Asthma and Chronic Obstructive Pulmonary Disease (COPD).” American Thoracic Society, 2021. https://www.atsjournals.org/doi/pdf/10.1164/ajrccm-conference.2021.203.1_MeetingAbstracts.A1665
  • Aran, N., Tregobov, N., Kooij, K., Harris, D., Goel, G., Poureslami, I. Health literacy and health outcomes in stroke management: a systematic review and evaluation of available measures. Journal of Humanities and Social Sciences. 2022; 5(2): 172-191. https://summit.sfu.ca/item/32433
  • Poureslami, I., FitzGerald, J. M., Tregobov, N., Goldstein, R. S., Lougheed, M. D., & Gupta, S. Health literacy in asthma and chronic obstructive pulmonary disease (COPD) care: a narrative review and future directions. Respiratory Research, 2022; 23(1): 1-36. DOI: 10.1186/s12931-022-02290-5. https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-022-02290-5
  • McMillan A, Tregobov N, Shum J, Christie I, Akhtar A, Poureslami I. Exploring chronic airways disease patients’ perspectives on self-management topics. Patient Education and Counseling. 2022; 105 (12): 3540-9. https://doi.org/10.1016/j.pec.2022.08.020
  • Poureslami I, Hohn RE, Kopec JA, Sawatzky R, Aaron SD, Gupta S, Goldstein R, Boulet LP, Tregobov N, Shum J; Canadian Airways Health Literacy Study Group. Evaluation of a New Performance-Based Health Literacy Measurement Tool for Individuals with Chronic Airways Disease. Respir Care. 2023; 68(5):638-648. https://doi.org/10.4187/respcare.10441. https://rc.rcjournal.com/content/68/5/638.short
  • Hohn RE, Kopec JA, Sawatzky R, Poureslami I. Measuring Skill-based Health Literacy in Individuals with Chronic Airway Disease: The development and psychometric evaluation of the Vancouver Airways Health Literacy Tool (VAHLT). Qual Life Res. 2023; 32(10):2875-2886. doi: 10.1007/s11136-023-03447-5. https://pubmed.ncbi.nlm.nih.gov/37428406/