Project description:BackgroundWith more than 103 million cases and 1.1 million deaths, the COVID-19 pandemic has had devastating consequences for the health system and the well-being of the entire US population. The Rare Diseases Clinical Research Network funded by the National Institutes of Health was strategically positioned to study the impact of the pandemic on the large, vulnerable population of people living with rare diseases (RDs).ObjectiveThis study was designed to describe the characteristics of COVID-19 in the RD population, determine whether patient subgroups experienced increased occurrence or severity of infection and whether the pandemic changed RD symptoms and treatment, and understand the broader impact on respondents and their families.MethodsUS residents who had an RD and were <90 years old completed a web-based survey investigating self-reported COVID-19 infection, pandemic-related changes in RD symptoms and medications, access to care, and psychological impact on self and family. We estimated the incidence of self-reported COVID-19 and compared it with that in the US population; evaluated the frequency of COVID-19 symptoms according to self-reported infection; assessed infection duration, complications and need for hospitalization; assessed the influence of the COVID-19 pandemic on RD symptoms and treatment, and whether the pandemic influenced access to care, special food and nutrition, or demand for professional psychological assistance.ResultsBetween May 2, 2020, and December 15, 2020, in total, 3413 individuals completed the survey. Most were female (2212/3413, 64.81%), White (3038/3413, 89.01%), and aged ≥25 years (2646/3413, 77.53%). Overall, 80.6% (2751/3413) did not acquire COVID-19, 2.08% (71/3413) acquired it, and 16.58% (566/3413) did not know. Self-reported cases represented an annual incidence rate of 2.2% (95% CI 1.7%-2.8%). COVID-19 cases were more than twice the expected (71 vs 30.3; P<.001). COVID-19 was associated with specific symptoms (loss of taste: odds ratio [OR] 38.9, 95% CI 22.4-67.6, loss of smell: OR 30.6, 95% CI 17.7-53.1) and multiple symptoms (>9 symptoms vs none: OR 82.5, 95% CI 29-234 and 5-9: OR 44.8, 95% CI 18.7-107). Median symptom duration was 16 (IQR 9-30) days. Hospitalization (7/71, 10%) and ventilator support (4/71, 6%) were uncommon. Respondents who acquired COVID-19 reported increased occurrence and severity of RD symptoms and use or dosage of select medications; those who did not acquire COVID-19 reported decreased occurrence and severity of RD symptoms and use of medications; those who did not know had an intermediate pattern. The pandemic made it difficult to access care, receive treatment, get hospitalized, and caused mood changes for respondents and their families.ConclusionsSelf-reported COVID-19 was more frequent than expected and was associated with increased prevalence and severity of RD symptoms and greater use of medications. The pandemic negatively affected access to care and caused mood changes in the respondents and family members. Continued surveillance is necessary.

Project description:BackgroundCoronavirus disease 2019 (COVID-19) has led to unprecedented changes in the way we live, particularly for people at higher risk of severe illness from COVID-19. People with pre-existing health conditions have been markedly impacted and, in some instances, left unsupported due to reduced provision of routine healthcare services. People living with obesity (PLWO) are identified as at higher risk of severe illness from COVID-19 infection. Currently, there is a paucity of evidence about the impact of the first COVID-19 lockdown on PLWO, including those accessing weight management and bariatric surgery services (WMS).Methods543 adults (16-80 years) with obesity (BMI ≥ 30 kg/m2) were recruited between 14th May and 9th July 2020 through social media advertisements, professional and patient obesity organisations and WMS. Participants completed an online survey regarding the impact of the first COVID-19 lockdown upon, mental health, well-being, health-related behaviours, risk mitigating behaviours, access to WMS and weight stigma.FindingsDuring the first COVID-19 lockdown, the majority of PLWO reported deterioration of their mental health and health-related behaviours such as diet, physical activity (PA) and sleep. With 55% reporting an unhealthier diet, 61% reduced PA and 80% worsening of their sleep. Higher depression and lower wellbeing scores were found to associate with the greatest adverse impact upon health-related behaviours. PLWO who were attending WMS prior to the first lockdown reported a greater deterioration of their diet, with nearly 50% reporting worsening of their diet and PA worsening compared to PLWO who were not attending WMS. Most participants took two or more risk mitigating actions (73%). PLWO attending WMS reported reduced access (44%) with insufficient information (49%) from their clinical service providers. The majority of participants reported no change in perceived weight stigma.InterpretationThis study shows the detrimental impact of the first COVID-19 lockdown on PLWO in relation to health-related behaviours, mental health and access to WMS. Our findings show that PLWO with poor mental health and those attending WMS were most adversely impacted and highlights the need for greater mental health support and continued provision of support from WMS for PLWO during future lockdowns.FundingThis research was funded through National Institute for Health Research University College London Hospitals Biomedical Research Centre funding.

Project description:ObjectivesTo determine the impact of COVID-19 pandemic social restriction measures on people with rheumatic and musculoskeletal diseases (RMDs) and to explore how people adapted to these measures over time.DesignMixed-methods investigation comprising a national online longitudinal survey and embedded qualitative study.SettingUK online survey and interviews with community-dwelling individuals in the East of England.ParticipantsPeople in the UK with RMDs were invited to participate in an online survey. A subsection of respondents were invited to participate in the embedded qualitative study.Primary and secondary outcome measuresThe online survey, completed fortnightly over 10 weeks from April 2020 to August 2020, investigated changes in symptoms, social isolation and loneliness, resilience and optimism. Qualitative interviews were undertaken assessing participant's perspectives on changes in symptoms, exercising, managing instrumental tasks such a shopping, medication and treatment regimens and how they experienced changes in their social networks.Results703 people with RMDs completed the online survey. These people frequently reported a deterioration in symptoms as a result of COVID-19 pandemic social restrictions (52% reported increase vs 6% reported a decrease). This was significantly worse for those aged 18-60 years compared with older participants (p=0.017). The qualitative findings from 26 individuals with RMDs suggest that the greatest change in daily life was experienced by those in employment. Although some retired people reported reduced opportunity for exercise outside their homes, they did not face the many competing demands experienced by employed people and people with children at home.ConclusionsPeople with RMDs reported a deterioration in symptoms when COVID-19 pandemic social restriction measures were enforced. This was worse for working-aged people. Consideration of this at-risk group, specifically for the promotion of physical activity, changing home-working practices and awareness of healthcare provision is important, as social restrictions continue in the UK.

Project description:BackgroundUncontrolled infection and lockdown measures introduced in response have resulted in an unprecedented challenge for health systems internationally. Whether such unprecedented impact was due to lockdown itself and recedes when such measures are lifted is unclear. We assessed the short- and medium-term impacts of the first lockdown measures on hospital care for tracer non-COVID-19 conditions in England, Scotland and Wales across diseases, sexes, and socioeconomic and ethnic groups.MethodsWe used OpenSAFELY (for England), EAVEII (Scotland), and SAIL Databank (Wales) to extract weekly hospital admission rates for cancer, cardiovascular and respiratory conditions (excluding COVID-19) from the pre-pandemic period until 25/10/2020 and conducted a controlled interrupted time series analysis. We undertook stratified analyses and assessed admission rates over seven months during which lockdown restrictions were gradually lifted.FindingsOur combined dataset included 32 million people who contributed over 74 million person-years. Admission rates for all three conditions fell by 34.2% (Confidence Interval (CI): -43.0, -25.3) in England, 20.9% (CI: -27.8, -14.1) in Scotland, and 24.7% (CI: -36.7, -12.7) in Wales, with falls across every stratum considered. In all three nations, cancer-related admissions fell the most while respiratory-related admissions fell the least (e.g., rates fell by 40.5% (CI: -47.4, -33.6), 21.9% (CI: -35.4, -8.4), and 19.0% (CI: -30.6, -7.4) in England for cancer, cardiovascular-related, and respiratory-related admissions respectively). Unscheduled admissions rates fell more in the most than the least deprived quintile across all three nations. Some ethnic minority groups experienced greater falls in admissions (e.g., in England, unscheduled admissions fell by 9.5% (CI: -20.2, 1.2) for Whites, but 44.3% (CI: -71.0, -17.6), 34.6% (CI: -63.8, -5.3), and 25.6% (CI: -45.0, -6.3) for Mixed, Other and Black ethnic groups respectively). Despite easing of restrictions, the overall admission rates remained lower in England, Scotland, and Wales by 20.8%, 21.6%, and 22.0%, respectively when compared to the same period (August-September) during the pre-pandemic years. This corresponds to a reduction of 26.2, 23.8 and 30.2 admissions per 100,000 people in England, Scotland, and Wales respectively.InterpretationHospital care for non-COVID diseases fell substantially across England, Scotland, and Wales during the first lockdown, with reductions persisting for at least six months. The most deprived and minority ethnic groups were impacted more severely.FundingThis work was funded by the Medical Research Council as part of the Lifelong Health and Wellbeing study as part of National Core Studies (MC_PC_20030). SVK acknowledges funding from the Medical Research Council (MC_UU_00022/2), and the Scottish Government Chief Scientist Office (SPHSU17). EAVE II is funded by the Medical Research Council (MR/R008345/1) with the support of BREATHE - The Health Data Research Hub for Respiratory Health (MC_PC_19004), which is funded through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK. BG has received research funding from the NHS National Institute for Health Research (NIHR), the Wellcome Trust, Health Data Research UK, Asthma UK, the British Lung Foundation, and the Longitudinal Health and Wellbeing strand of the National Core Studies programme.

Project description:Background The COVID-19 pandemic lockdown has posed numerous unique challenges for cancer patients, families and healthcare workers. However, the reports on psychosocial issues associated with such situations are scarce. This study aims to determine the psychosocial issues faced by cancer patients during COVID-19 pandemic lockdown. Methods Cancer patients irrespective of diagnosis and treatment status were assessed for fear of progression (FOP), distress and quality of life (QOL) using Fear of Progression- Short Form, Distress Thermometer and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ C30) 30, respectively. The demographics, disease and treatment related details were obtained from case record form. Psychological issues and concerns were collected using a structured interview. Descriptive statistics, Mann Whitney U-test and Linear Regression were performed using SPSS ver 20.0. Results Among the 219 patients, 118 (52.5%) had either interruption in their on-going cancer treatment or the initiation of cancer treatment was delayed as a result of COVID-19 lockdown. Overall, 74% of the patients experienced distress, 55.3% experienced FOP and 58% had low global health status. Pain followed by fatigue remained as major issues among patients during lockdown. Interruption in treatment and logistical issues were strongly associated with increased distress (p = 0.026) and FOP (p = 0.004). Global health status (p = 0.037), emotional functioning (p = 0.000), social functioning (p = 0.000) and financial concerns (p = 0.046) differed significantly between patients with and without treatment interruption. Age (β = -0.159), mode of transport (β = -0.135), challenges in meeting daily needs (β = -0.245) and being out-casted by the society (β = -0.227) predicted distress. Conclusion More than half of the patients had interruptions in their treatment as a result of COVID-19 lockdown. Cancer patients have had increased physical and psychological concerns as a result of the pandemic situation and its associated changes. Specific guidelines ought to be framed for providing continued and holistic cancer care for patients during such lockdown.

Project description:BackgroundThe coronavirus disease 2019 (COVID-19) pandemic may raise unique challenges for individuals with experience of eating disorders. Many factors have potential for detrimental impacts on psychological wellbeing and eating disorder recovery, including: Disruption to living situations, 'social distancing' restrictions, difficult access to healthcare, and societal changes to food behaviours and technology usage. To date, little is known on the impact of the pandemic on this population, particularly within the UK.MethodA mixed-methods online survey was developed for the purpose of this study. Data was collected from 129 individuals currently experiencing, or in recovery from, an eating disorder during the early stages of the UK pandemic lockdown. Participants were aged between 16 and 65 years, with 121 participants identifying as female, 7 male and 1 participant preferring not to disclose their gender.ResultsFindings suggest that the pandemic is having a profound, negative impact upon individuals with experience of eating disorders. Eight key themes were generated: Disruption to living situation, increased social isolation and reduced access to usual support networks, changes to physical activity rates, reduced access to healthcare services, disruption to routine and perceived control, changes to relationship with food, increased exposure to triggering messages, and positive outcomes. The results suggest detrimental impacts on psychological wellbeing including decreased feelings of control, increased feelings of social isolation, increased rumination about disordered eating, and low feelings of social support.ConclusionsIndividuals with eating disorders are at significant risk of negative impacts of the pandemic. There is a vital need for interventions to support this population. Inequalities in healthcare provision were identified, emphasising a need for a more cohesive approach to remote treatment across UK healthcare services. Positive aspects of technology use were identified but the results suggest a need to address and/or limit the potential for negative impacts of public messages around food and exercise behaviours, and to co-design technologies with end-users to facilitate effective treatment.

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Psychosocial impact of COVID-19 pandemic lockdown on people living with eye diseases in the UK.

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