Quality of life and its contributors among adults with late-onset Pompe disease in China.

BACKGROUND: Pompe disease (PD) is a rare inherited disorder caused by the deficiency of acid-α glucosidase, which leads to the impairment of organ and tissue functions and causes disabilities. As the first national survey on patients with late-onset PD (LOPD) in China, this study investigated the quality of life (QOL) of adult patients with LOPD in China and explored its contributors. METHODS: Data were derived from a nation-based, cross-sectional, self-response survey on rare diseases (RDs) in early 2018. Answers from 68 adult Chinese patients with LOPD were used for data analysis. QOL was measured using the World Health Organization Quality of Life: Brief Version. Covariates included age, gender, education, employment, reliance on assistive devices, medication history, social support, and disease economic burden. Data were analyzed using linear regression in R. RESULTS: For adult patients with LOPD, the average scores and standard deviations (SD) of the four dimensions of QOL were physical health = 33.77 (SD = 18.28), psychological health = 43.81 (SD = 21.70), environmental health = 39.43 (SD = 16.93), and social relationship = 46.20 (SD = 19.76); the scoring for each dimension was evaluated on a scale of 0 to 100. At the significance level of p < 0.05, with increasing age, the patients experienced a significant decrease in physical health QOL (β = - 0.75) and environmental health QOL (β = - 0.79). Those who relied heavily on assistive devices had lower perceived physical health (β = - 17.8), psychological health (β = - 22.76), environmental health (β = - 17.8), and social relationships (β = - 22.12) than those who did not. A one-unit increase in the amount of social support, as a form of social interaction, led to a significant increase in physical health (β = 0.28), psychological health (β = 0.71), environmental health (β = 0.72), and social relationships (β = 0.70). CONCLUSION: Adult Chinese patients with LOPD had a lower physical health and QOL compared to their counterparts with other RDs. Being employed was found to affect the QOL of adult Chinese patients with LOPD in almost all dimensions. Encouraging adult Chinese patients with LOPD to be socially active and help them become more involved in social life might improve their QOL

Quality of life and its contributors among adults with late-onset Pompe disease in China.

BACKGROUND: Pompe disease (PD) is a rare inherited disorder caused by the deficiency of acid-α glucosidase, which leads to the impairment of organ and tissue functions and causes disabilities. As the first national survey on patients with late-onset PD (LOPD) in China, this study investigated the quality of life (QOL) of adult patients with LOPD in China and explored its contributors. METHODS: Data were derived from a nation-based, cross-sectional, self-response survey on rare diseases (RDs) in early 2018. Answers from 68 adult Chinese patients with LOPD were used for data analysis. QOL was measured using the World Health Organization Quality of Life: Brief Version. Covariates included age, gender, education, employment, reliance on assistive devices, medication history, social support, and disease economic burden. Data were analyzed using linear regression in R. RESULTS: For adult patients with LOPD, the average scores and standard deviations (SD) of the four dimensions of QOL were physical health = 33.77 (SD = 18.28), psychological health = 43.81 (SD = 21.70), environmental health = 39.43 (SD = 16.93), and social relationship = 46.20 (SD = 19.76); the scoring for each dimension was evaluated on a scale of 0 to 100. At the significance level of p < 0.05, with increasing age, the patients experienced a significant decrease in physical health QOL (β = - 0.75) and environmental health QOL (β = - 0.79). Those who relied heavily on assistive devices had lower perceived physical health (β = - 17.8), psychological health (β = - 22.76), environmental health (β = - 17.8), and social relationships (β = - 22.12) than those who did not. A one-unit increase in the amount of social support, as a form of social interaction, led to a significant increase in physical health (β = 0.28), psychological health (β = 0.71), environmental health (β = 0.72), and social relationships (β = 0.70). CONCLUSION: Adult Chinese patients with LOPD had a lower physical health and QOL compared to their counterparts with other RDs. Being employed was found to affect the QOL of adult Chinese patients with LOPD in almost all dimensions. Encouraging adult Chinese patients with LOPD to be socially active and help them become more involved in social life might improve their QOL

‘Pandemia’: a reckoning of UK universities’ corporate response to COVID-19 and its academic fallout:A reckoning of UK universities’ corporate response to COVID-19 and its academic fallout.

Universities in the UK, and in other countries like Australia and the USA, have responded to the operational and financial challenges presented by the COVID-19 pandemic by prioritising institutional solvency and enforcing changes to the work-practices and profiles of their staff. For academics, an adjustment to institutional life under COVID-19 has been dramatic and resulted in the overwhelming majority making a transition to prolonged remote-working. Many have endured significant work intensification; others have lost — or may soon lose — their jobs. The impact of the pandemic appears transformational and for the most part negative. This article reports the experiences of n=1,099 UK academics specific to the corporate response of institutional leadership to the COVID-19 crisis. We find articulated a story of universities in the grip of 'pandemia' and COVID-19 emboldening processes and protagonists of neoliberal governmentality and market-reform that pay little heed to considerations of human health and wellbeing

What are the financial barriers to medical care among the poor, the sick and the disabled in the Special Administrative Region of China?

Although Hong Kong is one of the richest cities in the world and has some of the best health outcomes such as long life expectancy, little is known about the people who are unable to access healthcare due to lack of financial means. Cross-sectional data from a sample of 2,233 participants aged 18 or above was collected from the first wave of the "Trends and Implications of Poverty and Social Disadvantages in Hong Kong" survey. Socio-demographic factors, lifestyle factors, and physical and mental health conditions associated with people who were unable to seek medical services due to lack of financial means in the past year were examined using forward stepwise logistic regression analyses. Of the 2,233 participants surveyed, 8.4% did not seek medical care due to lack of financial means during the past year. They were more likely to be income-poor. With respect to physical and mental health, despite having less likelihood to have multimorbidity, they tended to have higher levels of both anxiety and stress, poorer physical and mental health-related quality of life, and suffer from more severe disability and pain symptoms affecting their daily activities, when compared to the rest of the Hong Kong population. People who were denied of medical care due to financial barriers are generally sicker than people in the general Hong Kong population, implying that those with greater healthcare needs may have financial difficulties in receiving timely and appropriate medical care. Our findings suggest that inequity in healthcare utilization remains a critical issue in Hong Kong

Housing, Sanitation and Living Conditions Affecting SARS-CoV-2 Prevention Interventions in 54 African Countries

We acknowledge funding from the UK Research and Innovation Global Challenge Research Fund (GCRF) (Grant Ref: ES/ T010487/1), the Conrad N. Hilton Foundation, the Bill and Melinda Gates Foundation, the Elisabeth Blackwell Institute for Health Research and the Beatriu de Pinós fellowship programme.The feasibility of non-pharmacological interventions (NPIs) such as physical distancing or isolation at home to prevent Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) transmission in low-resource countries is unknown. Household survey data from 54 African countries were used to investigate the feasibility of SARS-CoV-2 NPIs in low-resource settings. Across the 54 countries, approximately 718 million people lived in households with ≥6 individuals at home (median percentage of at-risk households 56% (95% confidence interval (CI), 51% to 60%)). Approximately 283 million people lived in households where ≥3 people slept in a single room (median percentage of at-risk households 15% (95% CI, 13% to 19%)). An estimated 890 million Africans lack on-site water (71% (95% CI, 62% to 80%)), while 700 million people lacked in-home soap/washing facilities (56% (95% CI, 42% to 73%)). The median percentage of people without a refrigerator in the home was 79% (95% CI, 67% to 88%), while 45% (95% CI, 39% to 52%) shared toilet facilites with other households. Individuals in low-resource settings have substantial obstacles to implementing NPIs for mitigating SARSCoV-2 transmission. These populations urgently need to be prioritized for COVID-19 vaccination to prevent disease and to contain the global pandemic

The Effects of Air Pollution on Mortality in Socially Deprived Urban Areas in Hong Kong, China

Background: Poverty is a major determinant of population health, but little is known about its role in modifying air pollution effects. Objectives: We set out to examine whether people residing in socially deprived communities are at higher mortality risk from ambient air pollution. Methods: This study included 209 tertiary planning units (TPUs), the smallest units for town planning in the Special Administrative Region of Hong Kong, China. The socioeconomic status of each TPU was measured by a social deprivation index (SDI) derived from the proportions of the population with a) unemployment, b) monthly household income < US$250, c) no schooling at all, d) one-person household, e) never-married status, and f) subtenancy, from the 2001 Population Census. TPUs were classified into three levels of SDI: low, middle, and high. We performed time-series analysis with Poisson regression to examine the association between changes in daily concentrations of ambient air pollution and daily number of deaths in each SDI group for the period from January 1996 to December 2002. We evaluated the differences in pollution effects between different SDI groups using a case-only approach with logistic regression. Results: We found significant associations of nitrogen dioxide, sulfur dioxide, particulate matter with aerodynamic diameter < 10 μm, and ozone with all nonaccidental and cardiovascular mortality in areas of middle or high SDI (p < 0.05). Health outcomes, measured as all nonaccidental, cardiovascular, and respiratory mortality, in people residing in high SDI areas were more strongly associated with SO 2 and NO 2 compared with those in middle or low SDI areas. Conclusions: Neighborhood socioeconomic deprivation increases mortality risks associated with air pollution.published_or_final_versio

The impact of socioeconomic development on population health now and into the future

published_or_final_versionCommunity MedicineDoctoralDoctor of Philosoph

Built Environment and Physical Activity among Adults in Hong Kong: Role of Public Leisure Facilities and Street Centrality

Physical inactivity has been identified as the fourth leading risk factor for global mortality, and has been shown to be related to the built environment. To fill the literature gap from a non-Western setting, we examined: (1) the associations between the built environment and physical activity (PA) behaviors, (2) how the association of street centrality with PA is mediated by public leisure facilities, and (3) whether the association of the built environment with PA differs among people with different perceived PA barriers in Hong Kong. Cross-sectional survey data on 1977 adults were used. Exposure to the built environment was assessed in terms of the density of four types of public leisure facilities (gyms, parks, recreational facilities, and sports facilities) and street centrality. Street centrality was a composite index calculated by gathering four related indicators (reach, betweenness, straightness, and intersection density). Covariates, including socio-demographic variables, perceived neighborhood environment, and perceived PA barriers, were considered. Gym density was significantly associated with vigorous physical activity, but the association became non-significant after controlling for covariates. Sports facility density was associated with a greater probability of moderate physical activity (MPA) and was greater in those who had perceived PA barriers. Additionally, sports facilities partially mediated the association of street centrality with MPA, and fully mediated the association of street centrality with prolonged sitting. Higher park density was associated with lower odds of prolonged sitting. It is important for governments to provide more sports facilities and parks to promote active PA, and to reduce sitting time in adults by creating an active built environment