<p>Development and Pretesting of a New Functional-Based Health Literacy Measurement Tool for Chronic Obstructive Pulmonary Disease (COPD) and Asthma Management</p>

Abstract

Background: Health literacy (HL) is a person's ability to practically apply a wide range of cognitive and non-cognitive skills in health-related decisions. HL includes five domains: navigate/ access, understand, communicate, evaluate, and use of health information and services. Currently, no tool accurately captures and measures HL in adult patients with asthma and COPD, while utilizing all 5-HL domains. Objective: Develop a comprehensive functional-based measurement tool for adult asthma and/or COPD patients, while assessing HL on routine actions required to manage their chronic respiratory condition(s). Methods: We developed our HL tool based on a conceptualization of the link between HL and asthma and COPD management, during needs assessment stage including; a systematic review, which was followed by patient-oriented focus groups, and key-informant and respirologist interviews. Preliminary face and content validation were obtained by patients' and health professionals' input prior to the pretesting stage. The needs assessment information enabled us to develop passages in scenario-format and corresponding items to assess HL core domains, in addition to numeracy skills, across nine self-management topics: peak flow meters, prednisone use, pulmonary rehabilitation, action plans, flu shots, inhaler technique, lifestyle (nutrition and exercise), trigger control, and map navigation. The tool was pretested with asthma and COPD patients to assess its relevance, clarity, and difficulty. Results: Our systematic review identified the deficiencies of existing HL tools that assessed the HL skills of asthma and COPD patients. The patient-oriented focus groups (n=93) enabled us to identify self-management topics and develop items for our proposed HL tool, which were enriched by input from 45 key informants (eg, policy makers, clinicians, etc.) and 17 respiratory physicians. Preliminary pretesting with a new cohort of participants (36 asthma and COPD patients and 39 key informants) aided in the refinement and finalized our tool. The modified tool included passages and corresponding items related to asthma and COPD management was pretested with 75 asthma/COPD patients who completed the questionnaire and provided their feedback on the clarity, relevance, and difficulty of the tool. The main barrier to self-management pertained to "communication" skills. The flu shot was the most relevant topic (91.2%), while map navigation was the least relevant (63.9%). Action plans were the most difficult topic, where only 55% knew when to utilize their action plans. Numeracy items challenged COPD patients the most. Conclusion: We summarized findings from the development and preliminary testing stages of a new asthma/COPD HL tool. This tool will now be validated with a new cohort of patients.

A Conceptual Model of Functional Health Literacy to Improve Chronic Airway Disease Outcomes

“…and one research assistant with experience in qualitative research analysis used NVivo software (QSR International, version 12) to code the data using thematic analysis. Details of the content analysis method [64-66] applied in this study are reported in our other publications [59,60]. Content analysis helped to identify participants' viewpoints about the role of beliefs and perceptions as well as the system-related factors relevant to accessing and using information and services for their disease self-management practices.…”

“…We also identi ed one's willingness and motivation (according to the health promotion concepts) to engage in self-management of their chronic disease as crucial factors to be considered. Finally, we conceptualized HL in a way to explain a structurally health literate competent care system, "a system that adopts HL as an organizational value strategy in its care model" [50,60,72,78]. Such a care system should not only provide equal opportunity to all community members in accessing the needed health information and services, but also empower patients with skills necessary to navigate the system and obtain the care they need to improve their health outcomes [89,90].…”

“…(B) 16 patient-oriented focus groups were conducted across Canada with 93 asthma and COPD patients from 2015-2016 to understand the challenges/ barriers pertaining to the ve HL domains with respect to selfmanagement practices, as well as to identify the most important disease management topics that patients were interested to receive information [59]. (C) 45 key-informant interviews conducted in-person/telephone/Skype with healthcare professionals, researchers, and policymakers from Canada, the US, the UK, and Australia in 2016 to obtain their insights on possible solutions to overcome the challenges expressed by focus group patients as well as to help validate the disease self-management topics indicated during focus group sessions [60]. (D) 17 interviews with Canadian respirologists were conducted in 2016 regarding the ideal functional HL skills asthma and/or COPD patients should possess to effectively self-manage their disease [61].…”

“…Even if it's accessible to them but they don't understand the language, it does not make sense, so it should be user friendly and should be accessible and available." Our previous studies indicate that an individual's need for health information is highly dependent on what health-related demands they face (e.g., contracting a particular disease) and whether they are exposed to information unintentionally, or intentionally while navigating and searching for information themselves [59,60,[73][74][75][76]. Therefore, we considered access-related skills in our model as a two-sided balance: (1) passive access to information (e.g., unintentionally received from their physician during an appointment without asking for it, learned in conversation from friends/family).…”

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

“…As HL is a rapidly evolving and expanding concept [49,50], there has been a call-to-action to develop appropriate frameworks to comprehensively measure its core components. Several models have been reported in the literature describing HL as a multidimensional construct that improves an individual's skills related to accessing, understanding and using health information to make informed decisions about one's health [51][52][53]. For instance, McCormack et al [54,55] developed a model that presents HL as an individual-level attribute that is affected by predisposing factors or socio-environmental aspects of the target population (e.g., culture and beliefs).…”