Assessing catastrophic health expenditure and impoverishment in adult asthma care: a cross-sectional study of patients attending six public health clinics in Klang District, Malaysia.

BACKGROUND: In Malaysia, asthma is a common chronic respiratory illness. Poor asthma control may increase out-of-pocket payment for asthma care, leading to financial hardships Malaysia provides Universal Health Coverage for the population with low user fees in the public health system to reduce financial hardship. We aimed to determine out-of-pocket expenditure on outpatient care for adult patients with asthma visiting government-funded public health clinics. We examined the catastrophic impact and medical impoverishment of these expenses on patients and households in Klang District, Malaysia. METHODS: This is a cross-sectional face-to-face questionnaire survey carried out in six government-funded public health clinics in Klang District, Malaysia. We collected demographic, socio-economic profile, and outpatient asthma-related out-of-pocket payments from 1003 adult patients between July 2019 and January 2020. Incidence of catastrophic health expenditure was estimated as the proportion of patients whose monthly out-of-pocket payments exceeded 10% of their monthly household income. Incidence of poverty was calculated as the proportion of patients whose monthly household income fell below the poverty line stratified for the population of the Klang District. The incidence of medical impoverishment was estimated by the change in the incidence of poverty after out-of-pocket payments were deducted from household income. Predictors of catastrophic health expenditure were determined using multivariate regression analysis. RESULTS: We found the majority (80%) of the public health clinic attendees were from low-income groups, with 41.6% of households living below the poverty line. About two-thirds of the attendees reported personal savings as the main source of health payment. The cost of transportation and complementary-alternative medicine for asthma were the main costs incurred. The incidences of catastrophic expenditure and impoverishment were 1.69% and 0.34% respectively. The only significant predictor of catastrophic health expenditure was household income. Patients in the higher income quintiles (Q2, Q3, Q4) had lower odds of catastrophic risk than the lowest quintile (Q1). Age, gender, ethnicity, and poor asthma control were not significant predictors. CONCLUSION: The public health system in Malaysia provides financial risk protection for adult patients with asthma. Although patients benefited from the heavily subsidised public health services, this study highlighted those in the lowest income quintile still experienced financial catastrophe and impoverishment, and the risk of financial catastrophe was significantly greater in this group. It is crucial to ensure health equity and protect patients of low socio-economic groups from financial hardship.

The impact of caregiving on caregivers of older persons and its associated factors: a cross-sectional study.

INTRODUCTION: Many older people rely on caregivers for support. Caring for older people can pose significant burdens for caregivers yet may also have positive effects. This study aimed to assess the impact on the caregivers and to determine factors associated with caregivers who were burdened. METHODS: This was a cross-sectional study of 385 caregivers of older people who attended a community clinic in Malaysia. Convenience sampling was employed during the study period on caregivers who were aged ≥ 21 years and provided ≥ 4 hours of unpaid support per week. Participants were asked to complete a self-administered questionnaire, which included the Carers of Older People in Europe (COPE) index and the EASYCare Standard 2010 independence score. The COPE index was used to assess the impact of caregiving. A highly burdened caregiver was defined as one whose scores for all three COPE subscales were positive for burden. Care recipients' independence was assessed using the independence score of the EASYCare Standard 2010 questionnaire. Multiple logistic regression was used to determine the factors associated with caregiver burden. RESULTS: 73 (19.0%) caregivers were burdened, of whom two were highly burdened. Caregivers' median scores on the positive value, negative impact and quality of support scales were 13.0, 9.0 and 12.0, respectively. Care recipients' median independence score was 18.0. Ethnicity and education levels were found to be associated with caregiver burden. CONCLUSION: Most caregivers gained satisfaction and felt supported in caregiving. Ethnicity and education level were associated with a caregiver being burdened.

What are the determinants for individuals to undergo cardiovascular disease health checks? A cross sectional survey.

BACKGROUND: There is a need to improve public's participation in health checks for early identification of individuals at high risk of CVD for prevention. The objective of this study is to identify significant determinants associated with individuals' intention to undergo CVD health checks. These determinants could be used to develop effective strategies to improve CVD health check participation. METHODS: This was a cross sectional survey using mall intercept interviews. It was carried out in a hypermarket surrounded by housing estates with a population of varying socioeconomic backgrounds. Inclusion criteria were Malaysian nationality and age 30 years and older. The validated CVD health check questionnaire was used to assess participants' intention and the determinants that influenced their intention to undergo CVD health checks. RESULTS: A total of 413 participants were recruited. The median age of the participants was 45 years (IQR 17 years) and 60% of them were female. Participants indicated they were likely (45.0%) or very likely (38.7%) to undergo CVD health checks while 16.2% were not sure, unlikely or very unlikely to undergo health checks. Using ordinal regression analysis, perception of benefits, drawbacks of CVD health checks, perception of external barriers and readiness to handle outcomes following CVD health checks were the significant determinants of individuals' intention to undergo CVD health checks. CONCLUSIONS: To improve individuals' participation in CVD health checks, we need to develop strategies to address their perception of benefits and drawbacks of CVD health checks, the perceived external barriers and their readiness to handle outcomes following CVD health checks.

Mind the gap in clinical trials: A participatory action analysis with citizen collaborators.

What are the strengths, gaps, expectations, and barriers to research engagement in clinical trials as communicated through social media? Clinical trials test treatments to provide reliable information for safety and effectiveness. Trials are building blocks in which what is learned in earlier research can be used to improve treatments, compare alternatives, and improve quality of life. For 20 years, the percentages of clinical trials volunteers have decreased whereas the costs of running clinical trials have multiplied. Participants enroll in trials to access latest treatments, to help others, and to advance science, but there is growing unrest. The priorities of those running the trials differ from those of the participants, and the roles for public research involvement lack clarity. Changes to bridge these gaps in the research culture are proposed through the use of participatory action research (PAR) in which stakeholders collaborate to improve research methodology, galvanize citizen participation, multiply health knowledge, problem-solve barriers to access, and explore the value of research volunteers as collaborators. PAR enabled the inclusion of citizens as full collaborators. Social media data were gathered for 120 days until saturation was reached. De-identified data were organized into a Strengths Weaknesses, Opportunities and Threats framework and coded into themes for analysis. After the analysis, the authors prioritized potential solutions for improving research engagement. Strengths and opportunities remained constant through trial phases, disease burdens, and interventions. Threats included alienation, litigation, disparity, and shaming. Poor management and barriers to inclusion were identified as weaknesses. Opportunities included improving resource management and information quality. Barriers were minimized when relationships between staff and participants were inclusive, respectful, tolerant, and open to change. Participants' communications ranged from fulfillment through trial involvement to disparities and rights violations. PAR provides a safe space without power imbalances in which researchers and citizen worked as equals rather than as researchers and objects of research.

Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors.

BACKGROUND: Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease with repeated exacerbations resulting in gradual debilitation. The quality of life has been shown to be poor in patients with COPD despite efforts to improve self-management. However, the evidence on the benefit of self-management in COPD is conflicting. Whether this could be due to other unmet needs of patients have not been investigated. Therefore, we aimed to explore unmet needs of patients from both patients and doctors managing COPD. METHODS: We conducted a qualitative study with doctors and patients in Malaysia. We used convenience sampling to recruit patients until data saturation. Eighteen patients and eighteen doctors consented and were interviewed using a semi-structured interview guide. The interviews were audio-recorded, transcribed verbatim and checked by the interviewers. Data were analysed using a thematic approach. RESULTS: The themes were similar for both the patients and doctors. Three main themes emerged: knowledge and awareness of COPD, psychosocial and physical impact of COPD and the utility of self-management. Knowledge about COPD was generally poor. Patients were not familiar with the term chronic obstructive pulmonary disease or COPD. The word 'asthma' was used synonymously with COPD by both patients and doctors. Most patients experienced difficulties in their psychosocial and physical functions such as breathlessness, fear and helplessness. Most patients were not confident in self-managing their illness and prefer a more passive role with doctors directing their care. CONCLUSIONS: In conclusion, our study showed that knowledge of COPD is generally poor. There was mislabelling of COPD as asthma by both patients and physicians. This could have resulted in the lack of understanding of treatment options, outcomes, and prognosis of COPD. The misconception that cough due to COPD was contagious, and breathlessness that resulted from COPD, had important physical and psychosocial impact, and could lead to social isolation. Most patients and physicians did not favour self-management approaches, suggesting innovations based on self-management may be of limited benefit.