A conceptual model of functional health literacy to improve chronic airway disease outcomes

Abstract

Background Current conceptual models of health literacy (HL) illustrate the link between HL and health outcomes. However, these models fail to recognize and integrate certain elements of disease management, health system factors, and socio-demographic factors into their framework. This article outlines the development of Chronic Airway Disease (CAD) Management and Health Literacy (CADMaHL) conceptual model that integrates the aforementioned elements and factors into a single framework. Methods Information obtained during the following stages informed the development of our model: (1) a systematic review of existing CAD HL measurement tools that apply core HL domains; (2) patient-oriented focus group sessions to understand HL barriers to CAD self-management practices; (3) key-informant interviews to obtain potential strategies to mitigate CAD management barriers, and validate disease self-management topics; (4) elicited the perspectives of Canadian respirologist’s on the ideal functional HL skills for asthma and COPD patients. Results Throughout the study process many stakeholders (i.e., patients, key-informants, and an international HL advisory panel) contributed to and reviewed the model. The process enabled us to organize the CADMaHL model into 6 primary modules, including: INPUT, consisting of four HL core components (access, understand, communicate, evaluate,) and numeracy skills; OUTPUT, including application of the obtained information; OUTCOME, covering patient empowerment in performing self-management practices by applying HL skills; ASSESSMENT, consisting of information about functionality and relevancy of CADMaHL; IMPACT, including mediators between HL and health outcomes; CROSSCUTTING FACTORS, consisting of diverse socio-demographics and health-system factors with applicability across the HL domains. Conclusions We developed the CADMaHL model, with input from key-stakeholders, which addresses a knowledge gap by integrating various disease management, health-system and socio-demographic factors absent from previous published frameworks. We anticipate that our model will serve as the backbone for the development of a comprehensive HL measurement tool, which may be utilized for future HL interventions for CAD patients. Trial registration NCT01474928- Date of registration: 11/26/2017.

An Integrated Framework to Conceptualize and Develop the Vancouver Airways Health Literacy Tool (VAHLT)

“…We found that patient involvement in prior HL tool-development processes was rare [33,48,49,51]. Our participants also mentioned, from their experience, that patients' voices were often missing when developing educational interventions, particularly as related to disease-management practices [45,60,69].…”

“…A validity-driven approach [48] was employed in the development of the VAHLT. We applied the five-domain HL definition suggested by CCHL [2], which is widely used in the HL field [38].…”

“…We have reported the process and findings of the informant interviews and respiratory experts' input elsewhere [30,43,46,62]. Knowledge generated from the SR and consultations with patients and professionals allowed us to identify and verify important disease-management topics, and understand the internal stimuli (e.g., beliefs, worldviews) and external barriers (e.g., health system and socioeconomic factors) to engage in CAD self-management [48].…”

Health literacy in asthma and chronic obstructive pulmonary disease (COPD) care: a narrative review and future directions

“…Accurate measurement of evaluation skills could help to identify the differences between patients’ expectations and their perceptions of the services and information received [ 61 ]. This evaluation skill component of HL is understudied, particularly in AD [ 68 , 78 ].…”

TeleHealth or TeleWealth? Equity challenges for the future of cystic fibrosis care (Commentary)

“…The interactions between ethnicity, socio-economic status, and digital/health literacy are multifaceted and complex [ 3 , 4 ] but the data generally demonstrate that significant disparities exist that disproportionately affect minority and lower socio-economic groups [5] , [6] , [7] . While one can argue these challenges are not exclusive to any single specialty[ 8 , 9 ], CF teams would do well to consider how best to tailor systems to improve outcomes for people with CF [10] .…”