Methods: Following Cochrane methodology, we searched ten databases (January 1990 - June 2018; updated October 2019), without language restriction. We included controlled experimental studies whose interventions targeted health literacy to improve asthma self-management. Selection of papers, extraction of data and quality assessment were done independently by two reviewers. The primary outcomes were clinical (asthma control) and implementation (adoption/adherence to intervention). Analysis was narrative.
Results: We screened 4318 titles and abstracts, reviewed 52 full-texts and included five trials. One trial was conducted in a LMIC. Risk of bias was low in one trial and high in the other four studies. Clinical outcomes were reported in two trials, both at high risk of bias: one of which reported a reduction in unscheduled care (number of visits in 6-month (SD); Intervention:0.9 (1.2) vs Control:1.8 (2.4), P = 0.001); the other showed no effect. None reported uptake or adherence to the intervention. Behavioural change strategies typically focused on improving an individual's psychological and physical capacity to enact behaviour (eg, targeting asthma-related knowledge or comprehension). Only two interventions also targeted motivation; none sought to improve opportunity. Less than half of the interventions used specific self-management strategies (eg, written asthma action plan) with tailoring to limited health literacy status. Different approaches (eg, video-based and pictorial action plans) were used to provide education.
Conclusions: The paucity of studies and diversity of the interventions to support people with limited health literacy to self-manage their asthma meant that the impact on health outcomes remains unclear. Given the proportion of the global population who have limited health literacy skills, this is a research priority.
Protocol registration: PROSPERO CRD 42018118974.
METHOD: A cross-sectional study was conducted among participants aged > 18 years with asthma who attended five primary health clinics in Malaysia. Systematic random sampling was employed with a final sample of 550 participants. The questionnaires included the validated Malay version of Health Literacy Scale (HLS) and asthma control questionnaire (ACQ). Statistical analysis was done using SPSS version 25. Multiple logistic regression was performed to determine the determinants for limited health literacy.
RESULTS: The participants mean age of the participants was 48 (SD15.4) years. Most of the participants were women (64%) and of Malay ethnicity (51.1%). Nearly half had a secondary level of education, n = 112, (45.8%). Mean duration of asthma diagnosis is 20.6 (SD 15.9) years. More than half (62.5%) had a family history of asthma. About half (50.9%) had uncontrolled asthma, with 87.3% self-rated themselves as having controlled asthma. About a third (29.1%) received education on of asthma action plan, but only 7.1% of these owned a written version an asthma action plan. Limited health literacy accounts for 60.5% of the participants. The significant determinants for limited health literacy included lower educational attainment (p
OBJECTIVE: The aim of this study is to develop and test a prototype asthma self-management mobile app tailored to the needs of people with limited health literacy through a web-based workshop.
METHODS: We recruited participants from a primary care center in Malaysia. We adapted a design sprint methodology to a web-based workshop in five stages over 1 week. Patients with asthma and limited health literacy provided insights into real-life self-management issues in stage 1, which informed mobile app development in stages 2-4. We recruited additional patients to test the prototype in stage 5 using a qualitative research design. Participants gave feedback through a concurrent thinking-aloud process moderated by a researcher. Each interview lasted approximately 1 hour. Screen recordings of app browsing activities were performed. Interviews were audio-recorded and analyzed using a thematic approach to identify utility and usability issues.
RESULTS: The stakeholder discussion identified four themes: individual, family, friends, and society and system levels. Five patients tested the prototype. Participants described 4 ways in which the app influenced or supported self-management (utility): offering information, providing access to an asthma action plan, motivating control of asthma through support for medication adherence, and supporting behavior change through a reward system. Specific usability issues addressed navigation, comprehension, and layout.
CONCLUSIONS: This study proved that it was possible to adapt the design sprint workshop to a web-based format with the added advantage that it allowed the development and the testing process to be done efficiently through various programs. The resultant app incorporated advice from stakeholders, including sources for information about asthma, medication and appointment reminders, accessible asthma action plans, and sources for social support. The app is now ready to move to feasibility testing.
OBJECTIVE: We explored how people with limited health literacy understand asthma and undertake self-management practices.
DESIGN: We adapted the arts-based qualitative methodology Photovoice.
SETTING AND PARTICIPANTS: We sampled ethnically diverse adults with asthma and limited health literacy from four primary healthcare clinics in Malaysia. After a semistructured in-depth interview, a subset of participants took part in the Photovoice component in which participants undertook a 2-week photo-taking activity and subsequent photo-interview. Interviews, conducted in participants' preferred language, were audio-recorded, transcribed verbatim, translated and analysed thematically. We used the Sorensen's framework (Domains: access, understand, appraise, apply) to describe participants' experience of living with asthma, what they understood about asthma and how they decided on self-management practices.
RESULTS: Twenty-six participants provided interviews; eight completed the Photovoice activities. Participants with limited health literacy used various sources to access information about asthma and self-management. Doctor-patient communication had a pivotal role in helping patients understand asthma. The lack of appraisal skills was significant and experiential knowledge influenced how they applied information. Self-management decisions were influenced by sociocultural norms/practices, stigmatizing experiences, and available social support.
CONCLUSION: Locally tailored multilevel interventions (interpersonal, health system, community and policy) will be needed to support people with limited health literacy to live optimally with their asthma in an ethnically diverse population.
PATIENT/PUBLIC CONTRIBUTION: Patients were involved in the study design, recruitment, analysis and dissemination.
DESIGN: A focus group and individual interview qualitative study using purposive sampling of participants to obtain diverse views. Data collection was guided by piloted semistructured topic guides. The focus groups and interviews were audiorecorded, transcribed verbatim and analysed using inductive thematic analysis. We completed data collection once data saturation was reached.
SETTING: Stakeholders in education and health sectors in Malaysia.
PARTICIPANTS: Fifty-two participants (40 school staff, 9 healthcare professionals and 3 policy-makers) contributed to nine focus groups and eleven individual interviews.
RESULTS: School staff had limited awareness of asthma and what to do in emergencies. There was no guidance on asthma management in government schools, and teachers were unclear about their role in school children's health. These uncertainties led to delays in the treatment of asthma symptoms/attacks, and suggestions that an asthma education programme and a school plan would improve asthma care. Perceived challenges in conducting school health programmes included a busy school schedule and poor parental participation. A tailored asthma programme in partnerships with schools could facilitate the programme's adoption and implementation.
CONCLUSIONS: Identifying and addressing issues and challenges specific to the school and wider community could facilitate the delivery of a school asthma programme in line with the WHO School Health Initiative. Clarity over national policy on the roles and responsibilities of school staff could support implementation and guide appropriate and prompt response to asthma emergencies in schools.
MAIN BODY: As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of 'keeping patients at the heart of everything we do'. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion.
CONCLUSION: With adaptation, the AUKCAR PPI model can be translated to international contexts.
METHODS AND ANALYSIS: Using Cochrane methodology, we searched (January 1990 to August 2021) six electronic databases using a PICOS (population, intervention, comparison, outcome, study type) search strategy, assessed Cochrane risk of bias, performed meta-analysis and narrative synthesis to answer our objectives and used the Grading of Recommendations, Assessment, Development and Evaluations framework to rate certainty of evidence.
RESULTS: We identified 16 studies (1800 COPD patients; 11 countries). The effects of home-PR on exercise capacity and/or health-related quality of life (HRQoL) were compared to either centre-PR (n=7) or usual care (n=8); one study used both comparators. Compared to usual care, home-PR significantly improved exercise capacity (standardised mean difference (SMD) 0.88, 95% CI 0.32-1.44; p=0.002) and HRQoL (SMD -0.62, 95% CI -0.88--0.36; p<0.001). Compared to centre-PR, home-PR showed no significant difference in exercise capacity (SMD -0.10, 95% CI -0.25-0.05; p=0.21) or HRQoL (SMD 0.01, 95% CI -0.15-0.17; p=0.87).
CONCLUSION: Home-PR is as effective as centre-PR in improving functional exercise capacity and quality of life compared to usual care, and is an option to enable access to pulmonary rehabilitation.
METHODS: We recruited patients with CRDs from two hospitals in Klang Valley, Malaysia to a home-PR programme. Following centre-based assessment, patients performed the exercises at home (five sessions/week for eight weeks (total 40 sessions)). We monitored the patients via weekly telephone calls and asked about adherence to the programme. We measured functional exercise capacity (6-Minutes Walking Test (6MWT) and Health-Related Quality-of-Life (HRQoL) (COPD Assessment Test (CAT)) at baseline and post-PR at nine weeks. We conducted semi-structured interviews with 12 purposively sampled participants to explore views and feedback on the home-PR programme. The interviews were audio recorded, transcribed verbatim, and analysed thematically.
RESULTS: We included 30 participants; two withdrew due to hospitalisation. Although 28 (93%) adhered to the full programme, only 11 (37%) attended the post-PR assessment because COVID-19 movement restrictions in Malaysia at that time prevented attendance at the centre. Four themes emerged from the qualitative analysis: involvement of family and caregivers, barriers to home-PR programme, interactions with peers and health care professionals, and programme enhancement.
CONCLUSION: Despite the COVID-19 pandemic, the home-PR programme proved feasible for remote delivery, although centre-based post-PR assessments were not possible. Family involvement played an important role in the home-PR programme. The delivery of this programme can be further improved to maximise the benefit for patients.
METHODS: We recruited eligible adults from the Klang Asthma Cohort registry in primary care for a 3-month mixed-method study plus a 2-month extended observation. We collected baseline data on socio-demography, health literacy and asthma control level. The outcomes of the intervention were assessed at 1- and 3-month: i) adoption (app download and usage), ii) adherence (app usage), iii) retention (app usage in the observation period), iv) health outcomes (e.g., severe asthma attacks) and v) process outcomes (e.g., ownership and use of action plans). At 1-month, participants were purposively sampled for in-depth interviews, which were audio-recorded, transcribed verbatim, and analysed deductively.
RESULTS: We recruited 48 participants; 35 participants (23 Female; median age = 43 years; median HLS score = 28) completed the 3 months study. Of these, 14 participants (10 Female; median age = 48 years; median HLS score = 28) provided interviews. Thirty-seven (77%) participants adopted the app (downloaded and used it in the first month of the study). The main factor reported as influencing adoption was the ease of using the app. A total of 950 app usage were captured during the 3-month feasibility study. App usage increased gradually, peaking at month 2 (355 total log-ins) accounting for 78% of users. In month 5, 51.4% of the participants used the app at least once. The main factors influencing continued use included adherence features (e.g., prompts and reminders), familiarity with app function and support from family members.
CONCLUSIONS: An asthma self-management app intervention was acceptable for adults with limited health literacy and it was feasible to collect the desired outcomes at different time points during the study. A future trial is warranted to estimate the clinical and cost-effectiveness of the intervention and to explore implementation strategies.