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R. van Maanen E. M. Trinks-Roerdink F. H. Rutten G. J. Geersing 《The European journal of general practice》2022,28(1):165
BackgroundDiagnostic delay in patients with pulmonary embolism (PE) is typical, yet the proportion of patients with PE that experienced delay and for how many days is less well described, nor are determinants for such delay.ObjectivesThis study aimed to assess the prevalence and extent of delay in diagnosing PE.MethodsA systematic literature search was performed to identify articles reporting delays in diagnosing PE. The primary outcome was mean delay (in days) or a percentage of patients with diagnostic delay (defined as PE diagnosis more than seven days after symptom onset). The secondary outcome was determinants of delay. Random-effect meta-analyses were applied to calculate a pooled estimate for mean delay and to explore heterogeneity in subgroups.ResultsThe literature search yielded 10,933 studies, of which 24 were included in the final analysis. The pooled estimate of the mean diagnostic delay based on 12 studies was 6.3 days (95% prediction interval 2.5 to 15.8). The percentage of patients having more than seven days of delay varied between 18% and 38%. All studies assessing the determinants of coughing (n = 3), chronic lung disease (n = 6) and heart failure (n = 8) found a positive association with diagnostic delay. Similarly, all studies assessing recent surgery (n = 7) and hypotension (n = 6), as well as most studies assessing chest pain (n = 8), found a negative association with diagnostic delay of PE.ConclusionPatients may have symptoms for almost one week before PE is diagnosed and in about a quarter of patients, the diagnostic delay is even longer. 相似文献
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Jason Talevski Stefan T. Kulnik Rebecca L. Jessup Roman Falls Natali Cvetanovska Alison Beauchamp 《Health expectations》2023,26(1):16
IntroductionThere is growing evidence to support the use of co‐design in developing interventions across many disciplines. This scoping review aims to examine how co‐design methodology has been used in the development of cardiovascular disease (CVD) secondary prevention interventions within health and community settings.MethodsWe searched four academic databases for studies that used the co‐design approach to develop their intervention. Studies were included if consumers (adults with CVD) and key stakeholders (e.g. clinicians, service providers) were involved in the co‐design process. The review focused on methodology rather than traditional study outcomes; therefore, co‐design processes and activities were extracted and evaluated against a selected co‐design framework.ResultsTwenty‐two studies were included in this review. Studies were implemented across various settings with consumers and stakeholder groups most frequently consisting of patients and healthcare professionals, respectively. Most studies specifically stated that they used a ‘co‐design’ approach (n = 10); others used terms such as participatory action research (n = 3), user‐centred design (n = 3) and community‐based participatory research (n = 2). Although there was variability in terminology, co‐design processes, and participants, all studies adhered to the key principles of consumer engagement. Predominant co‐design activities included semistructured interviews, focus groups, co‐design/development workshops and advisory group meetings. Intervention effectiveness was assessed in eight studies showing mixed results.ConclusionsThis review provides an overview of how the co‐design approach has previously been used in the development of CVD secondary prevention interventions. These findings provide methodological considerations that can guide researchers and healthcare services when implementing co‐design to develop feasible and acceptable interventions that can improve outcomes for CVD populations.Patient or Public ContributionNo patients, service users, caregivers, people with lived experience or members of the public were involved in this scoping review. This review article was written by academics who have undertaken a significant amount of co‐design work with consumers and stakeholders. 相似文献
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Christine M. Wickens Hayley A. Hamilton Tara Elton-Marshall Yeshambel T. Nigatu Damian Jankowicz Samantha Wells 《Canadian journal of public health. Revue canadienne de santé publique》2021,112(3):391
ObjectivesThe COVID-19 pandemic has generated multiple psychological stressors, which may increase the prevalence of depressive symptoms. Utilizing Canadian survey data, this study assessed household- and employment-related risk factors for depressive symptoms during the pandemic.MethodsA sample of 1005 English-speaking Canadian adults aged 18+ years completed a web-based survey after physical distancing measures were implemented across Canada. Hierarchical binary logistic regression analyses were conducted to examine the associations of depressive symptoms with household- (household size, presence of children, residence locale) and employment-related (job with high risk of COVID-19 exposure, working from home, laid off/not working, financial worry) risk factors, controlling for demographic factors (gender, age, education, income).ResultsAbout 20.4% of the sample reported depressive symptoms at least 3 days per week. The odds of experiencing depressive symptoms 3+ days in the past week were higher among women (AOR = 1.67, p = 0.002) and younger adults (18–29 years AOR = 2.62, p < 0.001). After adjusting for demographic variables, the odds of experiencing depressive symptoms were higher in households with 4+ persons (AOR = 1.88, p = 0.01), in households with children aged 6 to 12 years (AOR = 1.98, p = 0.02), among those with a job at high risk for exposure to COVID-19 (AOR = 1.82, p = 0.01), and those experiencing financial worry due to COVID-19 (‘very worried’ AOR = 8.00, p < 0.001).ConclusionPandemic responses must include resources for mental health interventions. Additionally, further research is needed to track mental health trajectories and inform the development, targeting, and implementation of appropriate mental health prevention and treatment interventions. 相似文献
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Ryan K McBain Carmel Salhi Katrina Hann Jim Kellie Alimamy Kamara Joshua A Salomon Jane J Kim Theresa S Betancourt 《Bulletin of the World Health Organization》2015,93(12):834-841
ObjectiveTo measure the benefits to household caregivers of a psychotherapeutic intervention for adolescents and young adults living in a war-affected area.MethodsBetween July 2012 and July 2013, we carried out a randomized controlled trial of the Youth Readiness Intervention – a cognitive–behavioural intervention for war-affected young people who exhibit depressive and anxiety symptoms and conduct problems – in Freetown, Sierra Leone. Overall, 436 participants aged 15–24 years were randomized to receive the intervention (n = 222) or care as usual (n = 214). Household caregivers for the participants in the intervention arm (n = 101) or control arm (n = 103) were interviewed during a baseline survey and again, if available (n = 155), 12 weeks later in a follow-up survey. We used a burden assessment scale to evaluate the burden of care placed on caregivers in terms of emotional distress and functional impairment. The caregivers’ mental health – i.e. internalizing, externalizing and prosocial behaviour – was evaluated using the Oxford Measure of Psychosocial Adjustment. Difference-in-differences multiple regression analyses were used, within an intention-to-treat framework, to estimate the treatment effects.FindingsCompared with the caregivers of participants of the control group, the caregivers of participants of the intervention group reported greater reductions in emotional distress (scale difference: 0.252; 95% confidence interval, CI: 0.026–0.4782) and greater improvements in prosocial behaviour (scale difference: 0.249; 95% CI: 0.012–0.486) between the two surveys.ConclusionA psychotherapeutic intervention for war-affected young people can improve the mental health of their caregivers. 相似文献
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Matilda Handsley-Davis Kostas Kapellas Lisa M Jamieson Joanne Hedges Emily Skelly John Kaidonis Poppy Anastassiadis Laura S Weyrich 《Evolution, Medicine, and Public Health》2022,10(1):352
Background and objectivesAboriginal Australians and Torres Strait Islanders (hereafter respectfully referred to as Indigenous Australians) experience a high burden of chronic non-communicable diseases (NCDs). Increased NCD risk is linked to oral diseases mediated by the oral microbiota, a microbial community influenced by both vertical transmission and lifestyle factors. As an initial step towards understanding the oral microbiota as a factor in Indigenous health, we present the first investigation of oral microbiota in Indigenous Australian adults.MethodologyDental calculus samples from Indigenous Australians with periodontal disease (PD; n = 13) and non-Indigenous individuals both with (n = 19) and without PD (n = 20) were characterized using 16S ribosomal RNA gene amplicon sequencing. Alpha and beta diversity, differentially abundant microbial taxa and taxa unique to different participant groups were analysed using QIIME2.ResultsSamples from Indigenous Australians were more phylogenetically diverse (Kruskal–Wallis H = 19.86, P = 8.3 × 10−6), differed significantly in composition from non-Indigenous samples (PERMANOVA pseudo-F = 10.42, P = 0.001) and contained a relatively high proportion of unique taxa not previously reported in the human oral microbiota (e.g. Endomicrobia). These patterns were robust to stratification by PD status. Oral microbiota diversity and composition also differed between Indigenous individuals living in different geographic regions.Conclusions and implicationsIndigenous Australians may harbour unique oral microbiota shaped by their long relationships with Country (ancestral homelands). Our findings have implications for understanding the origins of oral and systemic NCDs and for the inclusion of Indigenous peoples in microbiota research, highlighting the microbiota as a novel field of enquiry to improve Indigenous health. 相似文献
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BackgroundPatient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation.ObjectivesThis study aimed to develop a mobile application for health consumers'' participation and evaluate the effect of the mobile application on improving health consumers'' participation in patient safety.MethodsA quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants'' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey.ResultsThe intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p < .001), self‐efficacy of participation (p = .001), willingness to participate (p = .010) and experience of participation (p = .038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety.ConclusionsThis study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers'' health‐related behaviours.Patient or Public ContributionPatients were involved during the programme development and evaluation. 相似文献
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Brenton L. G. Button Tayyab I. Shah Andrew F. Clark Piotr Wilk Jason A. Gilliland 《Canadian journal of public health. Revue canadienne de santé publique》2021,112(1):107
ObjectiveThe objective was to examine the influence of weather on moderate-to-vigorous physical activity (MVPA) and light physical activity (LPA) levels of children aged 8–14 years from rural communities, an understudied Canadian population.MethodsChildren (n = 90) from four communities in rural Northwestern Ontario participated in this study between September and December 2016. Children’s MVPA and LPA were measured using an Actical accelerometer and demographic data were gathered from surveys of children and their parents. Weather data were collected from the closest weather station. Cross-classified regression models were used to assess the relationship between weather and children’s MVPA and LPA.ResultsBoys accumulated more MVPA than girls (b = 26.38, p < 0.01), children were more active on weekdays as compared with weekends (b = − 16.23, p < 0.01), children were less active on days with precipitation (b = − 22.88, p < 0.01), and higher temperature led to a significant increase in MVPA (b = 1.33, p < 0.01). As children aged, they accumulated less LPA (b = − 9.36, p < 0.01) and children who perceived they had higher levels of physical functioning got more LPA (b = 25.18, p = 0.02). Similar to MVPA, children had higher levels of LPA on weekdays (b = − 37.24, p < 0.01) as compared to weekend days and children accumulated less LPA (b = −50.01, p < 0.01) on days with rain.ConclusionThe study findings indicate that weather influences rural children’s MVPA and LPA. Future research is necessary to incorporate these findings into interventions to increase rural children’s overall PA levels and improve their overall health.Electronic supplementary materialThe online version of this article (10.17269/s41997-020-00324-3) contains supplementary material, which is available to authorized users. 相似文献
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Klaus Linde Christian Bergmaier Marion Torge Niklas Barth Antonius Schneider Alexander Hapfelmeier 《The European journal of general practice》2021,27(1):176
BackgroundAfter the ‘first wave’ in spring 2020, opinions regarding the threat and measures against COVID-19 seemed to vary among German general practitioners (GPs).ObjectivesTo systematically investigate opinions and to identify subgroups of GPs sharing similar views.MethodsA questionnaire was sent to all 210 practices accredited for undergraduate teaching of family medicine at the Medical Faculty of the Technical University of Munich. Questions addressed personal opinions regarding risks, dilemmas, restrictions and their relaxation associated with COVID-19, and personal fears, symptoms of depression and anxiety. Patterns of strong opinions (‘archetypes’) were identified using archetypal analysis, a statistical method seeking extremal points in the multidimensional data.ResultsOne hundred and sixty-one GPs sent back a questionnaire (response rate 77%); 143 (68%) with complete data for all 38 relevant variables could be included in the analysis. We identified four archetypes with subgroups of GPs tending in the direction of these archetypes: a small group of ‘Sceptics’ (n = 12/8%) considering threats of COVID-19 as overrated and measures taken as exaggerated; ‘Hardliners’ (n = 34/24%) considering threats high and supporting strong measures; ‘Balancers’ (n = 77/54%) who also rated the threats high but were more critical about potentially impairing the quality of life of elderly people and children; and ‘Anxious’ GPs (n = 20/14%) tending to report more fear, depressive and anxiety symptoms.ConclusionAmong the participants in this survey, opinions regarding the threat and the measures taken against COVID-19 during the ‘first wave’ in Germany in spring 2020 varied greatly. 相似文献
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Nicholas Smith Lynnette Leidy Sievert Shanthi Muttukrishna Khurshida Begum Lorna Murphy Taniya Sharmeen Richard Gunu Osul Chowdhury Gillian R Bentley 《Evolution, Medicine, and Public Health》2021,9(1):164
Background and objectivesLow levels of vitamin D among dark-skinned migrants to northern latitudes and increased risks for associated pathologies illustrate an evolutionary mismatch between an environment of high ultraviolet (UV) radiation to which such migrants are adapted and the low UV environment to which they migrate. Recently, low levels of vitamin D have also been associated with higher risks for contracting COVID-19. South Asians in the UK have higher risk for low vitamin D levels. In this study, we assessed vitamin D status of British-Bangladeshi migrants compared with white British residents and Bangladeshis still living in Bangladesh (‘sedentees’).MethodologyThe cross-sectional study compared serum vitamin D levels among 149 women aged 35–59, comprising British-Bangladeshi migrants (n = 50), white British neighbors (n = 54) and Bangladeshi sedentees (n = 45). Analyses comprised multivariate models to assess serum levels of 25-hydroxyvitamin D (25(OH)D), and associations with anthropometric, lifestyle, health and migration factors.ResultsVitamin D levels in Bangladeshi migrants were very low: mean 25(OH)D = 32.2 nmol/L ± 13.0, with 29% of migrants classified as deficient (<25 nmol/L) and 94% deficient or insufficient (≤50 nmol/L). Mean levels of vitamin D were significantly lower among British-Bangladeshis compared with Bangladeshi sedentees (50.9 nmol/L ± 13.3, P < 0.001) and were also lower than in white British women (55.3 nmol/L ± 20.9). Lower levels of vitamin D were associated with increased body mass index and low iron status.Conclusions and implicationsWe conclude that lower exposure to sunlight in the UK reduces vitamin D levels in Bangladeshi migrants. Recommending supplements could prevent potentially adverse health outcomes associated with vitamin D deficiency.Lay SummaryVitamin D deficiency is one example of mismatch between an evolved trait and novel environments. Here we compare vitamin D status of dark-skinned British-Bangladeshi migrants in the UK to Bangladeshis in Bangladesh and white British individuals. Migrants had lower levels of vitamin D and are at risk for associated pathologies. 相似文献
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BackgroundPatient‐reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access.MethodsThe MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12) and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettes and policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production.ResultsDeploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflect and rectify factors limiting immigrant women''s agency and access to quality services. Ultimately, the approach engaged patients as knowledge co‐producers for system‐level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland.ConclusionsBuilding on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient‐doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems level. The PREs approach presented may serve as an example and encourage more public health experts to consider PREs in future research and practice.Patient and Public ContributionWomen with chronic illness and immigration experience contributed to interview‐guideline development, provided PREs in interviews, identified priority areas for health‐service change and actively participated in the development of practice recommendations. 相似文献
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Research ObjectiveTo explore whether expanded Medicaid helps mitigate the relationship between unemployment due to COVID and being uninsured. Unanticipated unemployment spells are generally associated with disruptions in health insurance coverage, which could also be the case for job losses during the COVID‐19 pandemic. Expanded access to Medicaid may insulate some households from long uninsurance gaps due to job loss.Data SourcePhase 1 of the Census Bureau''s Experimental Household Pulse Survey covering April 23, 2020–July 21, 2020.Study DesignWe compare differences in health insurance coverage source and status linked to recent lob losses attributable to the COVID‐19 pandemic in states that expanded Medicaid against states that did not expand Medicaid.Data Collection/Extraction MethodsOur analytical dataset was limited to 733,181 non‐elderly adults aged 20–64.Principal FindingsTwenty‐six percent of our study sample experienced an income loss between March 13, 2020, and the time leading up to the survey—16% experienced job losses (e.g., layoff, furlough) due to the COVID‐19 crisis, and 11% had other reasons they were not working. COVID‐linked job losses were associated with a 20 (p < 0.01) percentage‐point (PPT) lower likelihood of having employer‐sponsored health insurance (ESI). Relative to persons in states that did not expand Medicaid, persons in Medicaid expansion states experiencing COVID‐linked job losses were 9 PPT (p < 0.01) more likely to report having Medicaid and 7 PPT (p < 0.01) less likely to be uninsured. The largest increases in Medicaid enrollment were among people who, based on their 2019 incomes, would not have qualified for Medicaid previously.ConclusionsOur findings suggest that expanded Medicaid eligibility may allow households to stabilize health care needs and they should become detached from private health coverage due to job loss during the pandemic. Households negatively affected by the pandemic are using Medicaid to insure themselves against the potential health risks they would incur while being unemployed. 相似文献
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Manoj Mohanan Sebastian Bauhoff Gerard La Forgia Kimberly Singer Babiarz Kultar Singh Grant Miller 《Bulletin of the World Health Organization》2014,92(3):187-194
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To evaluate the effect of the Chiranjeevi Yojana programme, a public–private partnership to improve maternal and neonatal health in Gujarat, India.Methods
A household survey (n = 5597 households) was conducted in Gujarat to collect retrospective data on births within the preceding 5 years. In an observational study using a difference-in-differences design, the relationship between the Chiranjeevi Yojana programme and the probability of delivery in health-care institutions, the probability of obstetric complications and mean household expenditure for deliveries was subsequently examined. In multivariate regressions, individual and household characteristics as well as district and year fixed effects were controlled for. Data from the most recent District Level Household and Facility Survey (DLHS-3) wave conducted in Gujarat (n = 6484 households) were used in parallel analyses.Findings
Between 2005 and 2010, the Chiranjeevi Yojana programme was not associated with a statistically significant change in the probability of institutional delivery (2.42 percentage points; 95% confidence interval, CI: −5.90 to 10.74) or of birth-related complications (6.16 percentage points; 95% CI: −2.63 to 14.95). Estimates using DLHS-3 data were similar. Analyses of household expenditures indicated that mean household expenditure for private-sector deliveries had either not fallen or had fallen very little under the Chiranjeevi Yojana programme.Conclusion
The Chiranjeevi Yojana programme appears to have had no significant impact on institutional delivery rates or maternal health outcomes. The absence of estimated reductions in household spending for private-sector deliveries deserves further study. 相似文献17.
Jasmin Bhawra Sharon I. Kirkpatrick David Hammond 《Canadian journal of public health. Revue canadienne de santé publique》2021,112(4):663
ObjectiveThis study explored associations between socio-demographic characteristics, self-reported health, and household food security among young adults.MethodsNational cohort study participants from Toronto, Montreal, Vancouver, Edmonton, and Halifax, Canada, aged 16–30 years (n = 2149) completed online surveys. Multinomial logistic regression, weighted to reflect age and sex proportions from the 2016 census, was conducted to examine associations between food security status and covariates.ResultsAlmost 30% of respondents lived in food-insecure households, with 19% in “moderately” food-insecure and 10% in “severely” food-insecure households. Respondents identifying as Black or Indigenous were more likely to live in moderately (AOR = 1.96, CI: 1.10, 3.50; AOR = 3.15, CI: 1.60, 6.20) and severely (AOR = 4.25, CI: 2.07, 8.74; AOR = 6.34, CI: 2.81, 14.30) food-insecure households compared with those identifying as mixed/other ethnicity. Respondents who found it “very difficult” to make ends meet were more likely to be moderately (AOR = 20.37, CI: 11.07, 37.46) and severely (AOR = 101.33, CI: 41.11, 249.77) food insecure. Respondents classified as “normal” weight (AOR = 0.64, CI: 0.43, 0.96) or overweight (AOR = 0.53, CI: 0.34, 0.83) were less likely to be moderately food insecure compared with those affected by obesity. Compared with “very good or excellent,” “poor” health, diet quality, and mental health were each positively associated with severe food insecurity (AOR = 7.09, CI: 2.44, 20.61; AOR = 2.63, CI: 1.08, 6.41; AOR = 2.09, CI: 1.03, 4.23, respectively).ConclusionThe high prevalence of correlates of food insecurity among young adults suggests the need for policies that consider the unique challenges (e.g., precarious income) and vulnerability associated with this life stage. 相似文献
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C. Andrew Basham Mohammad Ehsanul Karim Victoria J. Cook David M. Patrick James C. Johnston 《Canadian journal of public health. Revue canadienne de santé publique》2021,112(1):132
ObjectiveTo compare non-tuberculosis (non-TB)-cause mortality risk overall and cause-specific mortality risks within the immigrant population of British Columbia (BC) with and without TB diagnosis through time-dependent Cox regressions.MethodsAll people immigrating to BC during 1985–2015 (N = 1,030,873) were included with n = 2435 TB patients, and the remaining as non-TB controls. Outcomes were time-to-mortality for all non-TB causes, respiratory diseases, cardiovascular diseases, cancers, and injuries/poisonings, and were ascertained using ICD-coded vital statistics data. Cox regressions were used, with a time-varying exposure variable for TB diagnosis.ResultsThe non-TB-cause mortality hazard ratio (HR) was 4.01 (95% CI 3.57–4.51) with covariate-adjusted HR of 1.69 (95% CI 1.50–1.91). Cause-specific covariate-adjusted mortality risk was elevated for respiratory diseases (aHR = 2.96; 95% CI 2.18–4.00), cardiovascular diseases (aHR = 1.63; 95% CI 1.32–2.02), cancers (aHR = 1.40; 95% CI 1.13–1.75), and injuries/poisonings (aHR = 1.85; 95% CI 1.25–2.72).ConclusionsIn any given year, if an immigrant to BC was diagnosed with TB, their risk of non-TB mortality was 69% higher than if they were not diagnosed with TB. Healthcare providers should consider multiple potential threats to the long-term health of TB patients during and after TB treatment. TB guidelines in high-income settings should address TB survivor health.Electronic supplementary materialThe online version of this article (10.17269/s41997-020-00345-y) contains supplementary material, which is available to authorized users. 相似文献
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Puren Aktas 《Health expectations》2021,24(5):1812
ObjectiveThe restructuring of healthcare provision for the coronavirus disease 2019 (COVID‐19) pandemic caused disruptions in access for patients with chronic or rare diseases. This study explores the experiences of patients with chronic or rare diseases in access to healthcare services in Turkey during the COVID‐19 pandemic.MethodsSemi‐structured interviews were conducted with representatives (n = 10) of patient organisations (n = 9) based in Istanbul. Thematic analysis with an inductive approach was conducted to analyse the responses obtained through the interviews.ResultsThe lack of clinical information at the beginning of the pandemic caused fear among patients with chronic or rare diseases. Patients experienced obstacles in access to healthcare services because of the overcrowding of hospitals with COVID‐19 patients. Some treatment procedures were cancelled or postponed by physicians. Of these procedures, some were medically vital for those patients, leading to or exacerbating further health problems. The most positive measures that patients identified were where the Social Security Institution introduced regulations to facilitate access to prescribed medicine for chronic patients. Information exchange between the doctors and their patients was important to alleviate the uncertainty and reduce the anxiety among patients.DiscussionAccess problems experienced by patients during the COVID‐19 pandemic were a complex mix of factors including shortages and physical barriers, but also perceptions of barriers. The findings of this study show that patient organisations can provide insights on disease‐specific experiences and problems that are very valuable to improve access to healthcare services to achieve the universal health coverage target. Hence, this study emphasises the inclusion of patient organisations in decision‐making processes during times of health crises.Public ContributionRepresentatives of patient organisations participated in the interviews. 相似文献