4,260 research outputs found

    Aggression Among Children and Youth: An Examination of Service Allocation for Subtypes of Aggression

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    To date, there is a paucity of research examining service utilization in relation to aggression in youth, particularly when addressing the typologies of reactive and proactive aggression. This study aimed to determine how subtypes of aggression (reactive, proactive or comorbid) present for service allocation and cost. Participants consisted of 1283 youth receiving care in the province of Ontario, Canada. Bivariate and multivariate analyses using logistic regression were used. Results revealed significant associations between age and aggression type with service utilization. In particular, service complexity was most present for those with comorbid aggression. Those who were identified as reactive were significantly younger in age. No association between type of aggression and sex were found. Due to the scantiness of information for resource allocation for subtypes of aggression, this study will make a significant contribution to the field in assisting service providers and further providing implications for practice

    Bending the Medicare Cost Curve in 12 Months or Less: How Preventative Health Care can Yield Significant Near-Term Savings for Acute Care in Alberta

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    Over the course of more than 30 years, a series of Canadian government commissions and health policy researchers have repeatedly identified the importance of “bending the cost curve” to sustain publicly funded health care, and the potential to do so through upstream investment in health promotion and disease prevention. So far, however, the level of public investment in prevention represents only a slight portion of total public health care expenditure, largely consisting of traditional public health initiatives such as vaccinations, disease screening and information campaigns. This study of the Pure North S’Energy Foundation’s preventative health care program — wherein health care usage by program participants was measured against age- and sex-matched control samples — finds that the sort of preventative health care services offered by Pure North can lead to genuine and significant near-term cost savings for Canada’s single-payer health care system. Participants in the first year of the program required 25 per cent fewer hospital visits and 17 per cent fewer emergency room visits compared to the control group. Among those who persisted in the program for a year or longer, the effects were even more significant: 45 per cent fewer hospital visits in the year after joining, and 28 per cent fewer visits to emergency departments, compared to the control group. This represents real cost savings for a public health service: From 388perpersonwhojoinedtheprogramto388 per person who joined the program to 677 per person who persisted beyond the first year. As a proportion of annual health spending for these participants on hospitals, emergency departments and general practitioners, this represents a cost reduction ranging from 22 to 39 per cent. If the Alberta government were able to implement this kind of program provincewide (at an estimated cost of $500 per participant), and were to realize similar results in terms of reduced strain on acute care services, it is possible that the province could free-up the equivalent of 1,632 hospital beds every year. That is roughly the same as building two entirely new hospitals each on the scale of Calgary’s Foothills Medical Centre. This demonstrates that “bending the cost curve” for public health care spending is not merely something that is realizable in the long term, but rather in the immediate future, as quickly as within a year after this kind of program could be implemented province-wide. And yet, the near-term savings in acute care services represent only the first wave of benefits. The prevalence of chronic diseases and conditions, including diabetes, heart disease, cancer and mental illness, have been rising and are projected to keep doing so over the coming decade. The Pure North program aims to prevent and address these health conditions and chronic diseases through a combination of screening and testing, lifestyle modification, nutrition education, the identification of nutritional deficiencies, and dietary supplements. The long-term benefits of a Pure North-style program implemented province-wide in Alberta are likely to be that much greater as the prevalence of diabetes, heart disease, cancer and mental illness is tempered through the use of widespread preventative care. Then there are the broader “indirect benefits” of a generally healthier population: higher labour productivity, higher incomes and greater well-being. These returns to the Alberta government, and taxpayer, have the potential to be as large, if not larger, than the direct benefits of significantly reduced acute care costs

    Treat him as a normal baby: paediatrician's framing of parental responsibility as advice in the management of a genetic condition

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    Oral Presentation - Parallel Session 2: 2E Risk and Uncertainty/Ethics: no. 2E.4Parental responsibility in the management of genetic conditions has been the focus of both family-oriented interview-based research (e.g. Arribas-Ayllon et al. 2008; 2011) as well as real-life face-to-face genetic counselling research (Sarangi fc; Thomassen and Sarangi 2012). The current paper is an attempt to contribute to the latter tradition involving paediatricians and parents where parental responsibility is constitutive of professional advice. The genetic condition in question is G6PD deficiency (commonly known as favism), a mild hereditary disorder prevalent in Asia (Zayts and Sarangi 2013). We draw on 18 consultations in a maternal unit in Hong Kong (recruitment ongoing) where paediatricians communicate with mothers of newborns diagnosed with G6PD. We employ theme-oriented discourse analysis – comprising activity analysis and accounts analysis (Sarangi 2010) – to examine how the paediatricians frame their advice-giving trajectories – on to which elements of parental responsibility (in terms of future actions and moral selves) can be mapped. We show how 'causal responsibility' (Sarangi, fc) that concerns potential consequences of the mothers' actions in managing the condition emerges as a dominant thread in our data corpus. 'Causal [parental] responsibility' is embedded in the paediatrician's advice-giving trajectories which include, among other things, how to 'treat' these children, ranging from safeguards against certain medications and food to prevention of negative physiological scenarios (such as an acute hemolytic reaction). We examine closely the attendant discourse devices through which parental responsibility is framed, e.g., modalisation, contrast, character/event work. We conclude that, in terms of temporality, 'causal [parental] responsibility' is 'forward-looking' as the mothers' responsible actions can normalise the child’s immediate and future wellbeing.postprin

    Patterns of health service use among people experiencing homelessness and mental illness in British Columbia

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    Background: The burden of illness faced by people experiencing both homelessness and mental illness is staggering. When the needs of this population go unmet, it is often the healthcare system that is criticized. The aim of this thesis was to examine patterns of medical service use among people experiencing homelessness and mental illness, and to identify factors associated with high-levels of use, health outcomes and opportunities for intervention. It was hypothesized that people with the highest objective needs would access more medical services and that those who access care in a timely and continuous fashion would have better outcomes, including lower risk of hospitalization. Methods: Data were drawn from both the baseline interviews of Vancouver At Home (VAH) study participants and the Inter-Ministry Research Initiative database. All analyses were retrospective using both self-report and administrative data to examine factors associated with low vs. high health service use, continuity of care following hospitalization, and timeliness of community-based medical service use following detention in provincial custody. Results: Among VAH participants, we found that those with lower assessed need were accessing more health services that those with higher needs (i.e., schizophrenia). When continuity of care was examined, we found that our sample was accessing community-based outpatient services in both a timely and ongoing manner, however, it was not conferring a protective benefit against rehospitalization. Finally, when studying the impact of timely community medical service use following release from provincial custody, we found that those who accessed services in both a timely and continuous manner were more likely to be hospitalized than those not using services in this manner. Discussion: These findings highlighted the overwhelming burden of illness among people experiencing homelessness and mental illness. Contrary to our hypotheses, those with the greatest needs were not accessing the most health services, and for those who did access services frequently, these contacts did not offer protection against further negative health outcomes including hospitalization. Collectively these findings suggest looking beyond the healthcare system and underscore the importance of structural and systemic failings within our social, justice and healthcare systems as perpetuating the morbidity within this population

    What\u27s in a Message? The Impact of Patient-Clinician Email Message Content on Patient Health Outcomes and Healthcare Utilization

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    Introduction In the upcoming chapters, we present our study findings as three papers ready for submission to peer-reviewed journals. The first paper describes the associations between taxa and the characteristics of the patients and clinic staff who exchange those messages. The second paper explores the associations between those taxa and patients’ healthcare utilization. The third paper presents associations between taxa and patient health outcomes for diabetes and hypertension. We conclude with how the three papers are related and highlight the importance of this research. Across the three papers, we reference a theory-based taxonomy we developed specifically for secure messaging. A number of researchers have created taxonomies to classify secure message content. Although these contained common themes, many were used only once or twice in published research and few classified content generated by clinic staff. We built our taxonomy upon commonly used themes from these existing classification systems. In contrast with other researchers, however, we leveraged theoretical constructs to group taxa and identify the concepts within messages that must be present for logical linkages between message content and patient outcomes. To identify why patients might outreach to clinicians during times of uncertainty, we referenced Mishel’s Uncertainty in Illness Theory (Mishel, 1988, 1999). We leveraged the framework developed by Street, Makoul, Arora, and Epstein (2009) to highlight patient task-oriented requests that might manifest in secure messages (e.g., to support self-care, satisfaction), and clinician-generated content that might support improved patient health outcomes. Our three papers present the first reports using this taxonomy and are the first to explore associations between taxa, patient outcomes, and the senders’ and receivers’ characteristics. We sampled patients with diabetes and/or hypertension to demonstrate that our taxonomy could be applied to different health conditions, and to highlight any differences in taxa use based on health condition. We included threads initiated and completed between January 1 and December 31, 2017. Our study included 2111 patients, of whom 49 percent initiated 7346 threads that included 10163 patient-generated messages and 8146 messages generated by 674 unique clinic staff (hereafter referred to as clinician-generated messages). Patient and Clinic Staff Characteristics Associated with Message Content In the first paper, we described the coding process and interrater and intrarater reliability derived from that process, and then presented our findings on the characteristics of the senders and receivers associated with selected taxa. We estimated both unadjusted and adjusted differences in characteristics associated with the use of each taxon. We assessed taxon use as a dichotomous variable that was positive if the patient or clinician sent or received at least one message coded with the selected taxon. For patient-generated taxa, we explored associations with the characteristics of the sender (which types of patients sent these taxa) and receiver (which types of clinic staff received these types of content). Similarly, we explored the associations between clinician-generated taxa and the characteristics of the sender (what types of clinic staff sent these taxa) and receiver (what types of patients were the recipients of this content). We created separate regression models for patient characteristics (demographic, geographic, health condition and status, and thread volume) and staff characteristics (staff type, specialty, and message volume). Our patient-level analyses included only the 1031 patients who initiated message threads using the patient portal. Our analyses found differences in taxa use by patients’ age, sex, race, health condition and status, and distance from clinic. Younger patients and females were less likely to share certain types of information with clinic staff (clinic updates among younger patients OR=0.77; 95% CI: 0.65-0.91; self-reporting biometrics by women OR=0.78; 95% CI: 0.62-0.98). Use of certain types of task-oriented requests varied by age (younger patients’ prescription refills OR=0.77; 95% CI: 0.65-0.90 and scheduling requests OR=1.41; 95% CI: 1.19-1.68) and race (black vs white requests for preventive care appointments OR=2.68; 95% CI: 1.30-5.51, requests for a new or changed prescription OR=0.72; 95% CI: 0.53-0.98, and laboratory or other diagnostic procedures OR=0.66; 95% CI: 0.46-0.95). Younger and uninsured patients were less likely to receive medical guidance from clinic staff (OR=0.84; 95% CI: 0.71-0.99 and OR=0.21; 95% CI: 0.06-0.72, respectively), but patients with public payers were two times more likely to receive medical guidance compared to patients with private payers (95% CI: 1.27-3.24). Females were less likely to receive confirmation that requests were fulfilled (OR=0.81; 95% CI: 0.68-0.97). These findings highlight differences in how patients used secure messaging to communicate with their clinic staff, which could result in differential access to care. Further, the differences in taxa use by clinic staff by patients’ characteristics might further exacerbate existing disparities in care and highlight opportunities for training and education to reduce these discrepancies. Healthcare Services Utilization Associated with Message Content The Street, Makoul, et al. (2009) framework highlights access to care as an intermediate outcome in the pathway between health outcomes and communication functions such as information exchange, enabling self-care, and making decisions. Patients reported that effective communication delivered through secure messaging prevented unnecessary appointments (Alpert, Markham, Bjarnadottir, & Bylund, 2019); however, prior studies that explored links between secure messaging and healthcare utilization only considered message volume, not what was said in those messages. Our second paper is the first to explore whether content is associated with healthcare utilization. We measured utilization in four ways: number of outpatient visits, number of emergency department visits, number of inpatient visits, and medication adherence. We created separate medication adherence dichotomous variables for diabetes and hypertension, based on having an average condition-specific medication possession ratio greater than 0.8 (Clifford, Perez-Nieves, Skalicky, Reaney, & Coyne, 2014; Khunti, Seidu, Kunutsor, & Davies, 2017; Krass, Schieback, & Dhippayom, 2015; Schulz et al., 2016). We measured our independent variables as the taxon prevalence among patient- or clinician-generated taxa, as appropriate. Our covariates included the patient characteristics described in the first paper. To estimate incidence rate ratios for the three visit dependent variables, we conducted Poisson regressions with robust variance estimation (Hilbe, 2014). We estimated the odds of medication adherence associated with each taxon using logistic regression. In unadjusted analyses, we found that patients who initiated message threads had higher numbers of outpatient visits (p\u3c0.0001) and better hypertension medication adherence (p\u3c0.01), compared to patients who did not initiate threads. Among patients who initiated message threads, we identified a positive association between emergency department visits and prevalence of request denials from clinic staff (IRR=1.18; 95% CI: 1.03, 1.35) and patients’ requests for follow-up appointments (IRR=1.15; 95% CI: 1.07-1.23), as well as between clinic non-response and the number of outpatient visits (IRR=1.02; 95% CI: 1.00, 1.03). We identified an inverse association between hypertension medication adherence and patients’ appointment reschedule requests (OR=0.87; 95% CI: 0.79-0.96). These findings highlight opportunities for future research about the use of secure messaging to influence care delivery and access to care. Patient Health Outcomes Associated with Message Content Patients whose uncertainty in their illness is addressed experience less stress, leading to better health outcomes (Mishel, 1988). Through appropriate communication functions with clinicians, patients develop better understanding of their condition and how to manage it and may have improved access to care and self-care skills, which leads to better outcomes (Street, Makoul, et al., 2009). Our third paper describes the first study to assess the types of message content associated with improved health outcomes. We examined changes in patients’ glycemic index (A1C) for patients with diabetes and changes in diastolic (DBP) and systolic blood pressure (SBP) among patients with hypertension, comparing patients who sent or received messages with selected taxa to (1) those who sent other types of messages and (2) those who did not initiate threads in 2017. We measured outcome changes as the difference between baseline (the last measured value in 2016) and endpoint (the first measured value reported in 2018) measures. Similar to the analyses conducted for Paper 2, our independent variables were the prevalence of each taxon by patient, where the denominator was the number of patient- or clinician-generated taxa, as appropriate for the selected taxon. Analyses included only patients with the selected condition: 811 patients with diabetes only, 787 patients with hypertension only, and 513 patients with both conditions. We used linear regression to identify associations between the outcomes and each taxon. In unadjusted analyses, we found that patients who initiated threads had lower endpoint A1Cs (p=0.01) compared to patients who did not initiate threads. We observed improvements in A1C among patients who sent information seeking messages (b=-0.07; 95% CI: -0.13, -0.00). We also observed improved SBP associated with clinic non-response to patients’ threads (b=-0.30; 95% CI: -0.56, -0.04), staff acknowledgement and fulfillment of patients’ requests (b=-0.30; 95% CI: -0.58, -0.02), and patients’ complaints (b=-4.03; 95% CI: -7.94, -0.12). Poorer outcomes were associated with information sharing messages among patients with diabetes (b=0.08; 95% CI: 0.01, 0.15), and deferred information sharing by clinic staff among patients with hypertension (SBP b=1.29; 95% CI: 0.4-2.19). In addition, among patients with either condition, we observed positive associations between outcome and patient- and clinician-generated appreciation and praise messages with effect sizes ranging from 0.4 (A1C) to 5.69 (SBP). These findings demonstrate associations between outcomes and message content and further emphasize the need for training and education of clinic staff on appropriate use of secure messaging to prevent exacerbation of health disparities due to differential communication delivered through this modality. Conclusion We identified patient characteristics associated with patients’ use of taxa; not surprisingly, patients’ use of taxa varied by age, sex, and race. Taxa use varied by clinic staff characteristics consistent with the triage systems employed by most healthcare organizations (Heyworth et al., 2013; Ozkaynak et al., 2014; Wooldridge, Carayon, Hoonakker, Musa, & Bain, 2016). We also identified differences in staff’s taxa use based on the characteristics of the patient to whom they were sending the message. We further identified associations between taxa and healthcare utilization and health outcomes. If certain types of patients use taxa less frequently, and these taxa are associated with better outcomes or more appropriate utilization, then that presents opportunities to target those populations for education to shift their use of secure messaging. Further, if clinician-generated message content is associated with improved outcomes and clinic staff are not equitably sharing that content with all patients, there is an opportunity for education and training. Our research is a set of first-of-its-kind analyses that highlight differences in taxa use by both patients and clinicians and demonstrates the associations between those taxa and patient outcomes. Healthcare administrators and clinic staff should be aware of these associations and consider mitigation strategies to improve equitable secure messaging use by their staff and across their patient populations. The studies shared several limitations discussed in more detail in the papers themselves. These limitations included a need for more specificity in the taxa definitions and more rigorous coding processes, the lack of temporal indicators in the analysis, and limited patient and clinical characteristics. The analyses that incorporated A1C measurements suffered from significant missing data. Sample size for some taxa was limited so that the algorithms did not converge. The analyses were based on single taxa, which represented only one component of the overall thread discussion. Finally, our message sample included only those messages saved to patients’ charts, which likely led to an underrepresentation of taxa and clinic non-response. We highlighted a number of opportunities for future research across the three studies. Consideration should be given to refining taxa definitions and applying more rigorous coding practices, incorporating temporal elements into the analyses to provide context and support assessments of causality, adding relevant covariates such as message reading level or patients’ health literacy levels, and exploring other proximal and intermediate outcomes identified in the Street, Makoul, et al. (2009) framework. We also strongly recommend examining the impact of taxa pairings: analyses that consider the call-and-response nature of the full conversation occurring within the thread

    Potential overtreatment during life-limiting illness and end of life in older adults

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    Background. A growing body of evidence suggests that older patients are subject to potential overtreatment at the end of life, characterised by disease modifying therapies, preventive medications, and frequent care transitions. This occurs even though many older patients express a preference for symptom management and tend to avoid curative therapies near death. Nowadays age-related chronic diseases and neurodegenerative conditions are the top causes of death leading to a more foreseeable trajectory of decline at the end of life compared to compared to those who die suddenly or prematurely due to global pandemics. However, drugs and procedures, with longer time-to-benefit than the seriously ill older patients’ life expectancy, are still administered causing potential adverse events, deteriorated quality of life and higher dependency. Aim. The present doctoral thesis aimed to evaluate the quality of end-of-life care in older adults, with a focus on potential overtreatment and life-limiting illness. The four individual studies of the thesis contributed to this aim from different, yet complimentary aspects. Study I. We identified overtreatment indicators in the existing literature and discovered that nearly half of them cannot be appropriately measured in administrative and healthcare data in Sweden. However, based on the 15 unique indicators that we could measure, we estimated that one third (36.9%) of patients with solid cancer received care in their last month of life deemed as potential overtreatment. Cancer-specific treatments were the most common form of potential overtreatment (27.0%), followed-by potentially futile non-cancer specific treatments (12.3%), and hospital transitions (9.4%). Study II. We found that older decedents had an average 1.7 unplanned hospitalisations during their last year of life, which corresponded to an incidence rate of 175 per 100 person-years. Those with a cancer trajectory had the highest incidence rate at 231 per 100 patient-years, whereas individuals on a trajectory of prolonged dwindling had the lowest rate at 99 per 100 patient-years. Unplanned hospitalisations were unevenly distributed throughout the last year of life. From the third month before death, the incidence rate started to increase, which is the point where the different patterns of hospitalisation between illness trajectories became evident. Study III. We reported that endocrine treatment, which is a systemic disease modifying treatment, was initiated by 5% in the last three months of life and continued by 39% of the older decedents with hormone receptor-positive metastatic breast cancer. We found several factors linked to continuation of treatment, for example, higher age (RR85+ years: 1.25 [1.12-1.41]), higher education (RRtertiary education: 0.89 [0.81-0.98]), and multi-dose drug dispensing (RR: 1.22 [1.13-1.32]). Initiation of treatment was associated with, for instance, number of hospitalised days (RR1-14 inpatient days: 1.81 [1.12-2.91]) and CDK4/6 use (3.16 [2.25- 4.44]). Study IV. Based on a self-controlled case series analysis, we discovered that the concomitant dispensation of cholinesterase inhibitors (ChEIs) and non-steroidal anti- inflammatory drugs (NSAIDs) resulted in a heightened risk of peptic ulcer disease (adjusted IRR: 9.0, 95% confidence interval: 6.8-11.8, E-value: 17.5) compared to periods without treatment. This risk was over and beyond the risks observed for NSAIDs alone (IRR 5.2, 4.4-6.0, E-value: 9.8). We found no evidence of increased risks associated with the use of ChEIs alone (IRR 1.0, 0.9-1.2, E-value: 1.2). Conclusions. Our findings suggest that older adults and seriously ill individuals are potentially exposed to various types of treatment near the end of life that may be deemed as overtreatment, which warrants further attention from policy makers, healthcare professionals, researchers, and the society as a whole. Overly intensive care, fuelled by disease modifying treatments, preventive therapies and frequent transitions close to death is generally against the preferences of older people. Important to note that reducing or eliminating these types of treatments is not about rationing healthcare or denying treatment, but rather about ensuring that patients spend their last months in good quality care, characterised by symptom management and avoidance of unnecessary and preventable risks factors and adverse effects

    The Role of a Monoclonal Gammopathy of Undetermined Significance Diagnosis in Healthcare Utilization

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    Background Monoclonal Gammopathy of Undetermined Significance (MGUS) is an understudied precursor of multiple myeloma (MM), the second most prevalent hematologic malignancy in the United States. This dissertation was designed to: (1) Describe the trajectories of serum biomarkers over time in patients with an MGUS diagnosis, (2) Determine if an MGUS diagnosis is associated with changes in healthcare service utilization, and (3) explore the patient- and provider-level drivers of healthcare utilization in patients with MGUS. Methods Data sources include health claims and electronic health records from a community-based population of patients seeking care in central Massachusetts and primary qualitative data collected from providers and patients’ interviews. The analyses included descriptive statistics, group-based trajectory modeling, conditional Poisson regression, and qualitative data analyses. Results (1) Three distinct multi-trajectory groups of creatinine and hemoglobin were identified. (2) The rates of emergency room, hospital, and outpatient visits were higher for patients with MGUS than patients without MGUS. (3) Patients have a basic understanding of MGUS; however, some patients feel anxiety, which may affect other aspects of their lives. Patients primarily see hematologists for follow-up care; other providers have less knowledge about MGUS. Conclusions Biomarker trajectories characterize specific subpopulations of patients with MGUS over time. We found that an MGUS diagnosis is associated with higher healthcare utilization, especially during the months surrounding the diagnosis date. Finally, our study suggests that some patients with MGUS may need psychosocial support services and identifies a gap in knowledge around caring for MGUS patients among primary care providers

    Perceived stress, trust, safety and severity of SARS-CoV-2 infection among patients discharged from hospital during the COVID-19 pandemic's first wave: a PREMs survey

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    Aim To investigate experiences of stress, feelings of safety, trust in healthcare staff and perceptions of the severity of a SARS-CoV-2 infection among inpatients discharged from Valais Hospital, Switzerland, during the COVID-19 pandemic’s first wave. Methods Discharged patients aged 18 years or more (n=4665), hospitalised between 28 February and 11 May 2020, whether they had been infected by SARS-CoV-2 or not, were asked to complete a self-reporting questionnaire, as were their informal caregivers, if available (n=866). Participants answered questions from Cohen’s Perceived Stress Scale (PSS) (0=no stress, 40=severe stress), Krajewska-KuƂak et al’s Trust in Nurses Scale and Anderson and Dedrick’s Trust in Physician Scale (10=no trust, 50=complete trust), the severity of a SARS-CoV-2 infection (1=not serious, 5=very serious), as well as questions on their perceived feelings of safety (0=not safe, 10=extremely safe). Results Of our 1341 respondents, 141 had been infected with SARS-CoV-2. Median PSS score was 24 (IQR1–3=19–29), median trust in healthcare staff was 33 (IQR1–3=31–36), median perceived severity of a SARS-CoV-2 infection was 4 (IQR1−3=3–4) and the median feelings of safety score was 8 (IQR1–3=8–10). Significant differences were found between males and females for PSS scores (p<0.001) and trust scores (p<0.001). No significant differences were found between males and females for the perceived severity of SARS-CoV-2 infection scores (p=0.552) and the feelings of safety (p=0.751). Associations were found between age and trust scores (Rs=0.201), age and perceived SARS-CoV-2 severity scores (Rs=0.134), sex (female) and perceived stress (Rs=0.114), and sex (female) and trust scores (Rs=0.137). Associations were found between SARS-CoV-2 infected participants and the perceived SARS-CoV-2 severity score (Rs=−0.087), between trust scores and feelings of safety (Rs=0.147), and perceived severity of a SARS-CoV-2 infection (Rs=0.123). Discussion The results indicated that inpatients experienced significant feelings of stress regarding perceived symptoms of the illness, yet this did not affect their feelings of safety, trust in healthcare staff or perception of the severity of SARS-CoV-2 infection. Future patient-reported experience measures research is needed to give a voice to healthcare users and facilitate comparison measures internationally

    Epidemiology and long-term clinical characteristics of COVID-19 in Amsterdam, the Netherlands:Lessons learned and considerations for the future

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    Coronavirus disease 19 (COVID-19), caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), emerged in 2019 and caused a global pandemic. COVID-19 may present with a wide range of respiratory and non-specific symptoms, although asymptomatic infection may also occur. The first COVID-19 case in the Netherlands was notified on 27th February 2020 and the first wave of infections continued until 31st May 2020. The second wave emerged in autumn 2020 and continued until early 2021. It came to light during this time that some individuals experienced long-term, often debilitating symptoms after infection (“long COVID”). To date, long COVID pathogenesis remains unclear and no effective treatment exists. In this thesis, we first explored differences in COVID-19 burden in Amsterdam, the Netherlands, by migration background and city district (as a proxy for socio-economic status) during the first and second COVID-19 waves. We used routine surveillance data of notified COVID-19 infections, hospitalisations and deaths, matched to municipality data on country of birth and postal code of residence. We then described the evolution of COVID-19 symptoms, risk factors of delayed recovery, and the occurrence of severe fatigue and its determinants, up to 12 months after illness onset in a prospective cohort of adults with laboratory-confirmed SARS-CoV-2 infection (the VIS/RECoVERED study). Next, we zoomed in on two-year trajectories of COVID-19 symptoms in RECoVERED, the association between long COVID and aberrant inflammatory markers, and the effect of COVID-19 vaccination on existing long COVID symptoms. Together, these studies investigated the epidemiology and long-term clinical characteristics of COVID-19 in Amsterdam between 2020-2023
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