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1.
PLoS One ; 17(7): e0272252, 2022.
Article in English | MEDLINE | ID: covidwho-1963047

ABSTRACT

INTRODUCTION: The effects of the COVID-19 pandemic caused considerable psychological and physical effects in healthy and diseased New Yorkers aside from the effects in those who were infected. We investigated the relationship between known risk-enhancing and health-promoting factors (social and medical), comorbidity indicators, and, as the primary outcome, health-related quality of life (HRQoL). METHODS: Between April 22 and May 5, 2020, a market research agency (Dynata) administered a digital survey including the EQ-5D-5L and items related to individual characteristics, social position, occupational and insurance status, living situation, exposures (smoking and COVID-19), detailed chronic conditions, and experienced access to care to an existing internet panel representative of New Yorkers. RESULTS: 2684 persons completed the questionnaire. The median age was 48 years old, and most respondents were non-Hispanic white (74%) and reported at least higher vocational training or a university education (83%). During COVID-19, mean HRQoL scores were 0.82 for the EQ-5D-5L index and 79.3 for the EQ VAS. Scores varied for healthy and diseased respondents differently by the above determinants. Lower age, impaired occupational status, loss of health insurance, and limited access to care exerted more influence on EQ-5D-5L scores of diseased persons compared to healthy persons. Among diseased persons, the number of chronic conditions and limited access to health care had the strongest association with EQ-5D-5L scores. While EQ-5D-5L scores improved with increasing age, gender had no noticeable effect. Deprivation factors showed moderate effects, which largely disappeared in (stratified) multivariable analysis, suggesting mediation through excess chronic morbidity and poor healthcare access. Generally, modifying effects were larger in the EQ-5D-5L as compared to the EQ VAS. CONCLUSIONS: Almost all factors relating to a disadvantaged position showed a negative association with HRQoL. In diseased respondents, pre-existing chronic comorbidity and experienced access to health care are key factors.


Subject(s)
COVID-19 , Quality of Life , COVID-19/epidemiology , Chronic Disease , Health Inequities , Health Status , Humans , Middle Aged , New York/epidemiology , Pandemics , Quality of Life/psychology , Surveys and Questionnaires
2.
BMJ Open ; 11(7): e048198, 2021 07 20.
Article in English | MEDLINE | ID: covidwho-1495461

ABSTRACT

INTRODUCTION: Myasthenia gravis (MG) is a rare, chronic, autoimmune disease, mediated by immunoglobulin G antibodies, which causes debilitating muscle weakness. As with most rare diseases, there is little patient-reported data with which to understand and address patient needs. This study explores the impact of MG in the real world from the patient perspective. METHODS AND ANALYSIS: This is a 2-year prospective, observational, digital, longitudinal study of adults with MG, resident in the following countries: the USA, Japan, Germany, France, the UK, Italy, Spain, Canada and Belgium. The planned sample size is 2000. Recruitment will be community based, via patient advocacy groups, social media and word of mouth. Participants will use a smartphone application (app) to check eligibility, provide consent and contribute data. Planned data entry is as follows: (1) personal profile on enrollment-covering demographics, MG characteristics and previous care; (2) monthly event tracker-current treatments, healthcare visits, treatment-related adverse events, productivity losses; (3) monthly selection of validated generic and disease-specific patient-reported outcomes instruments: EQ-5D-5L, Myasthenia Gravis Activities of Daily Living, Myasthenia Gravis Quality of Life 15-item revised scale, Hospital Anxiety and Depression Scale and Health Utilities Index III. Analyses are planned for when the study has been running in most countries for approximately 6, 12, 18 and 24 months. ETHICS AND DISSEMINATION: The study protocol has been reviewed and granted ethics approval by Salus IRB for participants resident in the following countries: Germany, the UK and the US. Local ethics approval is being sought for the following study countries: Belgium, Canada, France, Italy, Japan and Spain. Study results will be communicated to the public and participants via conference presentations and journal publications, as well as regular email, social media and in-application communication. TRIAL REGISTRATION NUMBER: NCT04176211.


Subject(s)
Activities of Daily Living , Myasthenia Gravis , Adult , Belgium , Canada , France , Germany , Humans , Italy , Japan , Longitudinal Studies , Observational Studies as Topic , Prospective Studies , Quality of Life , Spain , Treatment Outcome
3.
SSM Popul Health ; 15: 100913, 2021 Sep.
Article in English | MEDLINE | ID: covidwho-1386635

ABSTRACT

OBJECTIVES: Our study aimed to (1) assess health-related quality of life (HRQoL) and mental well-being of healthy and diseased persons in the general population during the early stage of the COVID-19 pandemic and (2) examine the relationship between HRQoL and mental well-being and individual characteristics and government response against COVID-19, as measured by the stringency index. METHODS: A web-based survey was administered to a cohort of persons from the general population of eight countries: Greece, Italy, the Netherlands, Russia, South Africa, Sweden, the United Kingdom (UK) and the United States of America (US) from April 22 to May 5 and May 26 to June 1, 2020. Country-level stringency indices were adopted from the COVID-19 Government Response Tracker. Primary outcomes were HRQoL, measured using the EQ-5D-5L, and mental well-being, measured using the World Health Organization-5 Well-Being (WHO-5). FINDINGS: 21,354 respondents were included in the study. Diseased respondents had lower EQ-5D-5L and WHO-5 scores compared to healthy respondents. Younger respondents had lower WHO-5 scores than older respondents. The stringency index had a stronger association with the EQ-5D-5L and WHO-5 among diseased respondents compared to healthy respondents. Increasing stringency was associated with an increase in EQ-5D-5L scores but a decrease in the WHO-5 index. CONCLUSION: The stringency of government response is inversely related to HRQoL and mental well-being with a small positive relation with HRQoL and strong negative relation with mental well-being. The magnitude of effects differed for healthy and diseased persons and by age but was most favourable for diseased and older persons.

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