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1.
Afr J Reprod Health ; 27(6s): 116-128, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37694709

RESUMO

Prostate cancer (PCa) is currently the second most prevalent cancer in the world and the most common type of cancer among Nigerian men. This study explored the lived experiences of patients with PCa at the General Hospital in Ilorin, Kwara State, Nigeria. A mixed-method design was adopted. Purposive and consecutive sampling techniques were employed to recruit 50 and 10 participants for the quantitative and qualitative aspects respectively. Qualitative data was analyzed using thematic content analysis while quantitative data was analyzed using descriptive and inferential statistics. All participants were above the age of 50 years, 72% earned about $100 monthly while 68% were diagnosed in less than five years. Majority of the participants utilized adaptive coping styles and also found the strategies moderately helpful while living with the effects of radical prostatectomy. Participants also found the high cost of treatment severely challenging. Government and other stakeholders may need to subsidize the cost of PCa management thereby encouraging early accessibility to care, improved adherence to treatment and also reduce the economic burden of the disease on patients and their families.


Assuntos
População Negra , Prostatectomia , Neoplasias da Próstata , Humanos , Masculino , Pessoa de Meia-Idade , Adaptação Psicológica , População Negra/psicologia , Nigéria/epidemiologia , Neoplasias da Próstata/economia , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/cirurgia , População Urbana , Hospitais Gerais , Prostatectomia/efeitos adversos , Prostatectomia/métodos , Prostatectomia/psicologia , Acesso aos Serviços de Saúde/economia , Cooperação do Paciente/psicologia , Cooperação do Paciente/estatística & dados numéricos , Efeitos Psicossociais da Doença
2.
Br J Haematol ; 203(1): 36-42, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37735549

RESUMO

Defining immune thrombocytopenia (ITP) in two age groups-children and adults-overlooks the specific clinical features and needs of adolescents and young adults (AYAS). We previously reported a high risk of chronic disease at 12 months (50%); however, data on the course of chronic ITP, the risk of refractoriness and treatment strategies in AYAS are limited. Data from patients aged 12-25 years with chronic primary ITP at 12 months were extracted from three large registries between 2004 and 2021. Clinical and laboratory data were evaluated until 48 months of follow-up (FU). Refractory ITP was defined as the administration of ≥3 different lines of therapy. A total of 427 AYAS (64% female) with chronic ITP were included. Overall, 7% and 14% were classified as 'refractory' at 12 and 48 months of FU respectively. The proportion of males was greater in the refractory group than in the non-refractory group (43% vs. 35%). AYAS with refractory disease displayed lower median platelet counts, more bleeding and a higher need for treatment at initial diagnosis and FU than non-refractory patients. This study reveals that refractory ITP is uncommon in AYAS; however, AYAS with refractory ITP display a high disease burden at all time points, including at initial diagnosis.


Assuntos
Púrpura Trombocitopênica Idiopática , Trombocitopenia , Masculino , Humanos , Adolescente , Feminino , Adulto Jovem , Púrpura Trombocitopênica Idiopática/epidemiologia , Púrpura Trombocitopênica Idiopática/terapia , Contagem de Plaquetas , Efeitos Psicossociais da Doença , Sistema de Registros
3.
Influenza Other Respir Viruses ; 17(9): e13188, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37744994

RESUMO

Despite the growing recognition of a potentially significant respiratory syncytial virus (RSV) disease burden in adults, relevant evidence in the United Kingdom (UK) is limited. This systematic literature review (SLR) aimed to identify the disease burden of RSV in UK adults, including certain high-risk subgroups and existing evidence gaps. Published studies (2011 onwards) reporting epidemiological, economic and clinical burden outcomes in UK adults (≥15 years) with RSV were identified from indexed databases, including MEDLINE, Embase and the Cochrane library. High-risk groups included elderly (≥65 years), immunocompromised, co-morbid and co-infected patients. Outcomes included RSV incidence/prevalence, mortality, clinical presentation and direct/indirect resource use/costs. Twenty-eight publications on 28 unique studies were identified, mostly in general/respiratory indicator (n = 17), elderly (n = 10) and immunocompromised (n = 6) cohorts. Main outcomes reported in the general/respiratory indicator cohort were RSV infection incidence (seasonal/annual: 0.09-17.9%/6.6-15.1%), mortality (8,482 deaths/season) and direct resource use (including mean general practitioner [GP] episodes/season: 487,247). Seasonal/annual incidence was 14.6-26.5%/0.7-16% in high-risk cohorts. Attributed to RSV in the elderly were 7,915 deaths/season and 175,070 mean GP episodes/season. Only two studies reported on co-morbid cohorts. Clinical burden outcomes were only reported in general and immunocompromised patients, and no evidence was found in any cohort on indirect economic burden or RSV complications. Evidence captured suggests that RSV may have a substantial burden in UK adults. However, available data were limited and highly heterogenous, with further studies needed to characterise the burden of RSV in adults and to validate our findings.


Assuntos
Infecções por Vírus Respiratório Sincicial , Vírus Sincicial Respiratório Humano , Idoso , Humanos , Adulto , Infecções por Vírus Respiratório Sincicial/epidemiologia , Efeitos Psicossociais da Doença , Bases de Dados Factuais , Lacunas de Evidências
4.
BMC Health Serv Res ; 23(1): 1018, 2023 Sep 21.
Artigo em Inglês | MEDLINE | ID: mdl-37735428

RESUMO

BACKGROUND: Sickle cell disease (SCD) is a major public health concern in sub-Saharan Africa, accounting for nearly 75% of the global disease burden. The current analysis evaluated patient characteristics, treatment patterns, healthcare resource utilization (HCRU) and associated costs in patients with SCD based on a Private Medical Insurance Database in Ghana. METHODS: This retrospective longitudinal cohort study was conducted using an e-claims database from Ghana (01 January 2015 to 31 March 2021). Patients were stratified by age (0 month to < 2 years, ≥ 2 years to ˂6 years, ≥ 6 years to < 12 years, ≥ 12 years to < 16 years; ≥16 years), vaso-occlusive crisis (VOC) (< 1, ≥ 1 to < 3, and ≥ 3 per year), and continuous enrolment. Study outcomes related to patient characteristics, comorbidities, treatment pattern, HCRU were evaluated for pre- and post-index period (index period was between July 2015 to March 2020). Descriptive analysis was used to analyse different study variables. RESULTS: The study included 2,863 patients (mean age: 20.1 years; Min age: 0; Max age: 83; females 56.1%). Overall, 52.2% (n = 1,495) of SCD patients were ≥ 16 years and 17.0% (n = 486) were in the ≥ 2 to ˂6-years age group. The majority of patients aged ≥ 16 years (62.5%) in the database did not have reported VOC episodes, 35.9% of patients had 1 to 3 VOCs per year and 1.5% had ≥ 3 VOCs per year during the follow-up period. Consultation-based prevalence of SCD was 0.5% [95% confidence interval (CI): 0-1.3%] - 1.4% [CI: 0.6-2.2%]. Malaria, upper respiratory tract infection (URTI) and sepsis were the common complications of SCD. Analgesics were the most frequently prescribed medications followed by anti-infectives, hematinics, and antimalarials. Hydroxyurea, a routine standard of care for SCD was under-utilized. SCD patients had median cost incurred for consultation/hospital services of $11.3 (Interquartile range [IQR] $6.2 - $27.2). For patients with VOC, maximum median cost was incurred for medications ($10.9 [IQR $5.0-$32.6]). Overall median healthcare cost was highest for individuals with ≥ 3 VOCs per year during the follow-up period ($166.8 [IQR $70.3-$223.5]). CONCLUSION: In this retrospective private insurance claims database analysis, SCD imposes a significant healthcare burden, especially in patients with VOC. There is a need for reimbursed treatment options that could reduce the long-term burden associated with SCD and VOC.


Assuntos
Anemia Falciforme , Seguro , Compostos Orgânicos Voláteis , Feminino , Humanos , Adulto Jovem , Adulto , Recém-Nascido , Idoso de 80 Anos ou mais , Criança , Gana/epidemiologia , Estudos Longitudinais , Estudos Retrospectivos , Aceitação pelo Paciente de Cuidados de Saúde , Anemia Falciforme/epidemiologia , Anemia Falciforme/terapia , Efeitos Psicossociais da Doença
5.
PLoS One ; 18(9): e0283651, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37729207

RESUMO

OBJECTIVE: To identify the costs of hospital care for patients with COVID-19 and the amount of out-of-pocket payments. METHODS: We conducted a systematic review using Scopus and WEB OF SCIENCE and PubMed databases in April 5, 2022 and then updated in January 15, 2023. English articles with no publication year restrictions were included with study designs of cost-of-illness (COI) studies, cost analyses, and observational reports (cross-sectional studies and prospective and retrospective cohorts) that calculated the patient-level cost of care for COVID-19. Costs are reported in USD with purchasing power parity (PPP) conversion in 2020. The PROSPERO registration number is CRD42022334337. RESULTS: The results showed that the highest total cost of hospitalization in intensive care per patient was 100789 USD, which was reported in Germany, and the lowest cost was 5436.77 USD, which was reported in Romania. In the present study, in the special care department, the highest percentage of total expenses is related to treatment expenses (42.23 percent), while in the inpatient department, the highest percentage of total expenses is related to the costs of hospital beds/day of routine services (39.07 percent). The highest percentage of out-of-pocket payments was 30.65 percent, reported in China, and the lowest percentage of out-of-pocket payments was 1.12 percent, reported in Iran. The highest indirect cost per hospitalization was 16049 USD, reported in USA, and the lowest was 449.07 USD, reported in India. CONCLUSION: The results show that the COVID-19 disease imposed a high cost of hospitalization, mainly the cost of hospital beds/day of routine services. Studies have used different methods for calculating the costs, and this has negatively impacted the comparability costs across studies. Therefore, it would be beneficial for researchers to use a similar cost calculation model to increase the compatibility of different studies. Systematic review registration: PROSPERO CRD42022334337.


Assuntos
COVID-19 , Gastos em Saúde , Humanos , Pacientes Internados , Estudos Transversais , Estudos Prospectivos , Estudos Retrospectivos , COVID-19/epidemiologia , COVID-19/terapia , Hospitalização , Efeitos Psicossociais da Doença
6.
J Dermatolog Treat ; 34(1): 2246601, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37691405

RESUMO

BACKGROUND: Real-world data on the effectiveness of systemic therapy in atopic dermatitis (AD) are limited. METHODS: Adult patients with AD in the CorEvitas AD registry (2020-2021) who received systemic therapies for 4-12 months prior to enrollment were included based on disease severity: body surface area (BSA) 0%-9% and BSA ≥10%. Demographics, clinical characteristics, and outcomes were assessed using descriptive statistics. Pairwise effect sizes (ES) were used to compare BSA groups. RESULTS: The study included 308 patients (BSA 0%-9%: 246 [80%]; BSA ≥10%: 62 [20%]). Despite systemic therapy, both BSA groups reported the use of additional topical therapy and the presence of lesions at difficult locations. Moderate-to-severe AD (vIGA-AD®) was reported by 11% (BSA 0%-9%) and 66% (BSA ≥10%; ES = 0.56) of patients. Mean disease severity scores: total BSA (2% and 22%; ES = 3.59), EASI (1.1 and 11.1; ES = 2.60), and SCORAD (12.1 and 38.0; ES = 1.99). Mean scores for PROs: DLQI (3.7 and 7.5; ES = 0.75), and peak pruritus (2.2 and 4.5; ES = 0.81). Inadequate control of AD was seen in 27% and 53% of patients (ES = 0.23). CONCLUSIONS: Patients with AD experience a high disease burden despite systemic treatment for 4-12 months. This study provides potential evidence of suboptimal treatment and the need for additional effective treatment options for AD.


This real-world study assessed clinical characteristics and overall disease burden in adult patients with atopic dermatitis (AD) who were receiving systemic therapy for 4­12 months.Patients reported greater involvement of back and anterior trunk, and lesions at difficult locations. Irrespective of body surface area involvement, patients continued to experience inadequate control of AD, varied disease severity, and impact on quality of life.The study provides potential evidence of suboptimal treatment and the need for effective treatment options for the management of AD. Besides clinical outcomes, treating dermatologists and dermatology practitioners should include patient-reported outcomes in routine clinical care to determine the best treatment options for their patients.


Assuntos
Dermatite Atópica , Adulto , Humanos , Dermatite Atópica/tratamento farmacológico , Prurido , Administração Cutânea , Efeitos Psicossociais da Doença , Sistema de Registros
7.
AMA J Ethics ; 25(9): E674-677, 2023 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-37695869

RESUMO

Treatment-resistant schizophrenia can create a high disease burden for some patients, making it challenging for all involved to navigate a good outcome. Such cases require physicians to regard symptom eradication and treatment success as the same. This commentary on a case considers a palliative psychiatry approach grounded in the well-being of patients and inclusion of all stakeholders in decision-making processes.


Assuntos
Médicos , Psiquiatria , Humanos , Saúde Mental , Efeitos Psicossociais da Doença , Instalações de Saúde
8.
Clín. investig. ginecol. obstet. (Ed. impr.) ; 50(3): [100858], Jul-Sep. 2023. ilus, tab, graf
Artigo em Inglês | IBECS | ID: ibc-223306

RESUMO

Objective: The aim of this study is to determine the financial burden of preeclampsia (PE) from a single institution's perspective and then determine the cost of the illness from the reimbursement institution perspective and finally draw a regression model that predicts the annual cost of a patient. Materials and methods: The research is a descriptive and cross-sectional type of research and a retrospective cost analysis. Patients diagnosed with PE in 2021 were included in the study. For the regression analysis of the study, a dataset with 29 parameters belonging to 65 patients was created. Regression models were built on top of it. Results: In our study, per-patient expenses of PE patients from the perspective of the reimbursement institution were calculated and presented as average costs; severe PE patient with cesarean section 7598.5 Ł ($769.8), severe PE patient with normal vaginal delivery 8487.48 Ł (1050.43 $), mild PE patient with cesarean section 5331.67 Ł ($659.86) and mild PE patient with normal vaginal delivery was calculated as 6220.65 Ł (769.88 $). In the study, different regression formulas were created for the two groups of PE. The created regression model had an R2 score of 91.85%. Conclusion: The actors involved in the management of the disease should determine the cost-effectiveness of the disease by using the financial data of the patients and choose the right approach. Health costs in Turkey differ from the parameters in the European Union economy. Therefore, there are lower health costs. The financial findings of the disease are a guide for health policy makers, health managers and researchers.(AU)


Objetivo: El objetivo de este estudio es determinar la carga financiera de la preeclampsia (PE) desde la perspectiva de una única institución, para luego determinar los costes de la enfermedad desde la perspectiva de la institución de reembolso, y así elaborar un modelo de regresión que prediga el coste anual de un paciente. Materiales y métodos: Se trata de una investigación de tipo descriptivo, transversal y de un análisis retrospectivo de costes. Se incluyeron en el estudio los pacientes diagnosticados de PE en 2021. Para el análisis de regresión del estudio se creó un conjunto de datos con 29 parámetros que pertenecían a 65 pacientes diferentes. Los modelos de regresión se construyeron en base a este. Resultados: En nuestro estudio, los gastos por paciente de las pacientes con PE desde la perspectiva de la institución de reembolso se calcularon y presentaron como costos promedio; paciente con PE grave con cesárea 7598.5 (769.8 $), paciente con PE grave con parto vaginal normal 8487.48 (1050.43 $), paciente con PE leve con cesárea 5331.67 (659.86 $) y paciente con PE leve con parto vaginal normal se calculó como 6220.65 (769.88 $). En el estudio se crearon diferentes fórmulas de regresión para los dos grupos de PE. El modelo de regresión creado tuvo una puntuación R2 de 91,85%. Conclusión: Los agentes implicados en la gestión de la enfermedad tendrán que determinar su rentabilidad utilizando los datos económicos de los pacientes y elegir el enfoque adecuado. Los costes sanitarios en Turquía difieren de los parámetros de la economía de la Unión Europea. Por tanto, los costes sanitarios se reducen. Los hallazgos financieros de la enfermedad servirán de guía para los responsables de las políticas de salud, los gerentes de salud y los investigadores.(AU)


Assuntos
Humanos , Pré-Eclâmpsia , Reembolso de Seguro de Saúde , Análise de Regressão , Efeitos Psicossociais da Doença , Unidade Hospitalar de Ginecologia e Obstetrícia , Ginecologia , Pesquisa , Epidemiologia Descritiva , Estudos Retrospectivos , Estudos Transversais
9.
Orv Hetil ; 164(38): 1497-1505, 2023 Sep 24.
Artigo em Húngaro | MEDLINE | ID: mdl-37742222

RESUMO

Due to its high incidence and mortality, oral cancer makes a group of diseases of public health importance. Oral screening is a simple three-step procedure: the first step is questioning the patient about his/her smoking/drinking habits, secondly, visual inspection of the oral cavity, and finally, palpation of regional lymph nodes. If precancerous conditions or any form of oral cancer are suspected, the task is to send the examined person to oral clinical care. The examination can routinly be performed by dentists, but also by general practitioners and occupational health personnel. The difficulty of oral screening arises from the fact that most of the patients are of low socio-economic status. The organization of oral screening is the responsibility of the healthcare system personnel: their task is to identify the high-risk persons and to direct them to the scene of the screening. Orv Hetil. 2023; 164(38): 1497-1505.


Assuntos
Clínicos Gerais , Neoplasias Bucais , Humanos , Feminino , Masculino , Detecção Precoce de Câncer , Neoplasias Bucais/diagnóstico , Neoplasias Bucais/prevenção & controle , Linfonodos , Efeitos Psicossociais da Doença
10.
Front Public Health ; 11: 1190197, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37744497

RESUMO

Objectives: With the aging United Kingdom population, oral diseases are expected to increase. Exploring credible projections is fundamental to understanding the likely impact of emerging population-level interventions on oral disease burden. This study aims at providing a credible, evidence-based projection of the adult population in the United Kingdom with dental caries and periodontal diseases. Methods: We developed a multi-state population model using system dynamics that disaggregates the adult population in the United Kingdom into different oral health states. The caries population was divided into three states: no caries, treated caries, and untreated caries. The periodontal disease population was disaggregated into no periodontal disease, pocketing between 4 and < 6 mm, 6 and < 9 mm, and 9 mm or more. Data from the 2009 dental health survey in the United Kingdom was used to estimate age and gender-specific prevalence rates as input to the multi-state population model. Results: Of the population 16 years and older, the number with carious teeth is projected to decrease from 15.742 million in the year 2020 to 15.504 million by the year 2050, representing a decrease of 1.5%. For individuals with carious teeth, the older adult population is estimated to constitute 62.06% by 2050 and is projected to increase 89.4% from 5.079 million in 2020 to 9.623 million by 2050. The adult population with periodontal pocketing is estimated to increase from 25.751 million in 2020 to 27.980 million by 2050, while those with periodontal loss of attachment are projected to increase from 18.667 million in 2020 to 20.898 million by 2050. The burden of carious teeth and periodontal diseases is anticipated to shift from the adult population (16-59 years) to the older adult population. The older adult population with carious teeth is estimated to rise from 32.26% in 2020 to 62.06% by 2050, while that for periodontal disease is expected to increase from 42.44% in 2020 to 54.57% by 2050. Conclusion: This model provides evidence-based plausible future demand for oral health conditions, allowing policymakers to plan for oral health capacity to address growing needs. Because of the significant delay involved in educating and training oral health personnel, such projections offer policymakers the opportunity to be proactive in planning for future capacity needs instead of being reactive.


Assuntos
Cárie Dentária , Doenças Periodontais , Humanos , Idoso , Cárie Dentária/epidemiologia , Doenças Periodontais/epidemiologia , Envelhecimento , Efeitos Psicossociais da Doença , Reino Unido/epidemiologia
11.
Front Public Health ; 11: 1210238, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37744515

RESUMO

Peru is a historically unique and culturally diverse Latin American country. As a low-to-middle-income country (LMIC), Peru faces health implications from the spread of communicable diseases as well as a growing rate of noncommunicable diseases, both of which have been worsened by the recent COVID-19 pandemic's impact on the national health system. Over the past two decades, the country has aimed to improve health access for its population through various efforts described in this review. Despite this, there are notable neurological health disparities that exist today. This narrative review investigates such disparities through the leading neurological contributors to the national burden of disease in the country, including migraine headaches, cerebrovascular disease, and dementia. Public health disparities that contribute to other major neurological diseases in the country, including epilepsy, neurocysticercosis, Chagas disease, multiple sclerosis, traumatic brain injury, traumatic and non-traumatic spinal cord injuries are also investigated. We also explore potential solutions for overcoming the various neurological health disparities covered in this review that may be applied through public policies, as well as in similar LMICs in Latin America. By overcoming such disparities, the country may be able to successfully address the major contributors of neurological disease burden and create a healthcare environment that can sustainably and equitably improve health outcomes for Peruvian people.


Assuntos
COVID-19 , Doença de Chagas , Humanos , Peru/epidemiologia , COVID-19/epidemiologia , Pandemias , Efeitos Psicossociais da Doença
12.
BMJ Open ; 13(9): e068498, 2023 09 04.
Artigo em Inglês | MEDLINE | ID: mdl-37666561

RESUMO

OBJECTIVE: This analysis is to present the burden and trends of morbidity and mortality due to lower respiratory infections (LRIs), their contributing risk factors, and the disparity across administrative regions and cities from 1990 to 2019. DESIGN: This analysis used Global Burden of Disease 2019 framework to estimate morbidity and mortality outcomes of LRI and its contributing risk factors. The Global Burden of Disease study uses all available data sources and Cause of Death Ensemble model to estimate deaths from LRI and a meta-regression disease modelling technique to estimate LRI non-fatal outcomes with 95% uncertainty intervals (UI). STUDY SETTING: The study includes nine region states and two chartered cities of Ethiopia. OUTCOME MEASURES: We calculated incidence, death and years of life lost (YLLs) due to LRIs and contributing risk factors using all accessible data sources. We calculated 95% UIs for the point estimates. RESULTS: In 2019, LRIs incidence, death and YLLs among all age groups were 8313.7 (95% UI 7757.6-8918), 59.4 (95% UI 49.8-71.4) and 2404.5 (95% UI 2059.4-2833.3) per 100 000 people, respectively. From 1990, the corresponding decline rates were 39%, 61% and 76%, respectively. Children under the age of 5 years account for 20% of episodes, 42% of mortalities and 70% of the YLL of the total burden of LRIs in 2019. The mortality rate was significantly higher in predominantly pastoralist regions-Benishangul-Gumuz 101.8 (95% UI 84.0-121.7) and Afar 103.7 (95% UI 86.6-122.6). The Somali region showed the least decline in mortality rates. More than three-fourths of under-5 child deaths due to LRIs were attributed to malnutrition. Household air pollution from solid fuel attributed to nearly half of the risk factors for all age mortalities due to LRIs in the country. CONCLUSION: In Ethiopia, LRIs have reduced significantly across the regions over the years (except in elders), however, are still the third-leading cause of mortality, disproportionately affecting children younger than 5 years old and predominantly pastoralist regions. Interventions need to consider leading risk factors, targeted age groups and pastoralist and cross-border communities.


Assuntos
Poluição do Ar , Infecções Respiratórias , Criança , Humanos , Idoso , Pré-Escolar , Etiópia/epidemiologia , Infecções Respiratórias/epidemiologia , Fatores de Risco , Efeitos Psicossociais da Doença
13.
Orphanet J Rare Dis ; 18(1): 264, 2023 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-37667390

RESUMO

BACKGROUND: Leigh Syndrome (LS) is a rare genetic neurometabolic disorder, that leads to the degeneration of the central nervous system and subsequently, early death. LS can be caused by over 80 mutations in mitochondrial or nuclear DNA. Patient registries are important for many reasons, such as studying the natural history of the disease, improving the quality of care, and understanding the healthcare burden. For rare diseases, patient registries are significantly important as patient numbers are small, and funding is limited. Cure Mito Foundation started a global patient registry for LS in September 2021 to identify and learn about the LS patient population, facilitate clinical trial recruitment, and unite international patients and researchers. Priorities were to allow researchers and industry partners to access data at no cost through a clear and transparent process, active patient engagement, and sharing of results back to the community. RESULTS: Patient registry platform, survey design, data analysis process, and patient recruitment strategies are described. Reported results include demographics, diagnostic information, symptom history, loss of milestones, disease management, healthcare utilization, quality of life, and caregiver burden for 116 participants. Results show a high disease burden, but a relatively short time to diagnosis. Despite the challenges faced by families impacted by Leigh syndrome, participants, in general, are described as having a good quality of life and caregivers are overall resilient, while also reporting a significant amount of stress. CONCLUSION: This registry provides a straightforward, no-cost mechanism for data sharing and contacting patients for clinical trials or research participation, which is important given the recruitment challenges for clinical trials for rare diseases. This is the first publication to present results from a global patient registry for Leigh Syndrome, with details on a variety of patient-specific and caregiver outcomes reported for the first time. Additionally, this registry is the first for any mitochondrial disease with nearly 70% of participants residing outside of the United States. Future efforts include continued publication of results and further collaboration with patients, industry partners, and researchers.


Assuntos
Doença de Leigh , Humanos , Doença de Leigh/genética , Qualidade de Vida , Doenças Raras , Sistema Nervoso Central , Efeitos Psicossociais da Doença
14.
Artigo em Chinês | MEDLINE | ID: mdl-37667155

RESUMO

Objective: To analyze the change trends and risk factors of mesothelioma disease burden in Jiangsu Province from 1990 to 2019. Methods: In January 2022, using the 2019 Global Burden of Disease Study Data, the Joinpoint regression model was used to analyze the change trends of incidence, mortality, disable-adjusted life years (DALY) and premature mortality of mesothelioma residents in Jiangsu Province from 1990 to 2019, and the attribution level of mesothelioma risk factors was estimated by population attributing fraction. Results: The standardized incidence rates of mesothelioma in Jiangsu Province from 1990 to 2019 ranged from 0.07/10(5) to 0.09/10(5), with an average annual percentage change (AAPC) of -1.1% (t=-13.56, P<0.001). AAPCs in males and females were -0.3% (t=-2.18, P=0.029) and -1.6% (t=-11.39, P<0.001), respectively. The standardized mortality rates of mesothelioma ranged from 0.07/10(5) to 0.09/10(5), the AAPC was -1.1% (t=-12.23, P<0.001), AAPC was -1.6% (t=-14.09, P<0.001) for females, and there was no significant change in males (t=-1.83, P=0.068). The premature mortality was 0.004%-0.006%, the AAPC was -1.0% (t=-4.40, P<0.001), AAPC was -1.7% (t=-13.72, P<0.001) for females, and there was no significant change in males (t=-0.68, P=0.495). The standardized DALY rates ranged from 1.86/10(5) to 2.32/10(5), the AAPC was -0.9% (t=-11.08, P<0.001), AAPC was -1.6% (t=-11.05, P<0.001) for females, and there was no significant change in males (t=-0.95, P=0.343). Both the standardized years of life lost (YLL) rate and the standardized years lived with disability (YLD) rate showed a decreasing trend, and the AAPCs were -0.9% (t=-7.66, P<0.001) and -1.0% (t=-12.88, P<0.001), respectively. The proportion of YLL in DALY was more than 98.5%. Among the risk factors for mesothelioma burden attribution, the AAPC attributed to occupational asbestos exposure of DALY was 1.4% (t=3.43, P=0.001). The AAPC of DALY rate of standardized attribution was -1.7% (t=-12.11, P<0.001) . Conclusion: The overall burden of mesothelioma in Jiangsu Province is decreasing, occupational asbestos exposure is still the main risk factor of mesothelioma in Jiangsu Province, and early diagnosis and treatment should be strengthened.


Assuntos
Mesotelioma Maligno , Mesotelioma , Exposição Ocupacional , Feminino , Masculino , Humanos , Mesotelioma/epidemiologia , Fatores de Risco , Efeitos Psicossociais da Doença
15.
Int J Mol Sci ; 24(17)2023 Aug 25.
Artigo em Inglês | MEDLINE | ID: mdl-37686026

RESUMO

Mesenchymal Stem Cells (MSC) represent a captivating field of research attempting to address the vast variety of disease burdens, which at present lack efficient treatment [...].


Assuntos
Células-Tronco Mesenquimais , Efeitos Psicossociais da Doença
16.
BMC Complement Med Ther ; 23(1): 328, 2023 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-37723467

RESUMO

BACKGROUND: Migraine is a complex neurovascular disorder with considerable clinical, social and economic issues. Tai chi has the potential to be an alternative prophylactic treatment for migraine with high safety since the adverse effects and limited efficacy of available medications. AIMS: The proposed study aims to compare the prophylaxis efficacy of 24-week Tai Chi training on migraine attacks with the standard prophylactic medication; and to explore the mechanism of Tai Chi in preventing migraine attacks by analyzing the associations between changes of migraine attacks and changes of neurovascular functions and inflammatory makers. METHOD: This is a two-arm parallel non-inferiority randomized controlled trial. In total 220 Hong Kong Chinese women aged 18-65 years with diagnosis of episodic migraine will be recruited and randomized to either the Tai Chi training group or the standard prophylactic medication group with 1:1 ratio, and receive the 24 weeks of modified 33-short form Yang-style Tai Chi training and the standard prophylactic medications, respectively. A 24-week follow-up will be implemented for both groups. For efficacy examination, the primary outcome was the frequency of migraine attacks measured by the migraine diary; and for the mechanism exploration, the primary outcome was the volume and number of white matter hyperintensity (WMH) measured by magnetic resonance imaging (MRI). The measurements will be conducted at the baseline, 24th weeks, and 48th weeks. Linear mixed model will be adopted to comprehensively analyze the changes of variables within and between groups. DISCUSSION: Given the importance of reducing disease burden and financial cost of migraine attacks, the findings of this study will provide new insights regarding the role of Tai Chi in alleviating migraine burden and further shed light on the mechanism action of Tai Chi on preventing headache attacks. TRIAL REGISTRATION: ClinicalTrials.gov NCT05690737. Registered on January 28, 2023.


Assuntos
Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Transtornos de Enxaqueca , Tai Chi Chuan , Feminino , Humanos , Efeitos Psicossociais da Doença , Cefaleia , Transtornos de Enxaqueca/prevenção & controle , Ensaios Clínicos Controlados Aleatórios como Assunto , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso
17.
J Am Coll Cardiol ; 82(13): 1331-1340, 2023 09 26.
Artigo em Inglês | MEDLINE | ID: mdl-37730290

RESUMO

BACKGROUND: Congenital heart defects are the most common and resource-intensive birth defects. As children with congenital heart defects increasingly survive beyond early childhood, it is imperative to understand longitudinal disease burden. OBJECTIVES: The purpose of this study was to examine chronic outpatient prescription medication use and expenditures for New York State pediatric Medicaid enrollees, comparing children who undergo cardiac surgery (cardiac enrollees) and the general pediatric population. METHODS: This was a retrospective cohort study of all Medicaid enrollees age <18 years using the New York State Congenital Heart Surgery Collaborative for Longitudinal Outcomes and Utilization of Resources database (2006-2019). Primary outcomes were total chronic medications per person-year, enrollees per 100 person-years using ≥1 and ≥3 medications, and medication expenditures per person-year. We described and compared outcomes between cardiac enrollees and the general pediatric population. Among cardiac enrollees, multivariable regression examined associations between outcomes and clinical characteristics. RESULTS: We included 5,459 unique children (32,131 person-years) who underwent cardiac surgery and 4.5 million children (22 million person-years) who did not. More than 4 in 10 children who underwent cardiac surgery used ≥1 chronic medication compared with approximately 1 in 10 children who did not have cardiac surgery. Medication expenditures were 10 times higher per person-year for cardiac compared with noncardiac enrollees. Among cardiac enrollees, disease severity was associated with chronic medication use; use was highest among infants; however, nearly one-half of adolescents used ≥1 chronic medication. CONCLUSIONS: Children who undergo cardiac surgery experience high medication burden that persists throughout childhood. Understanding chronic medication use can inform clinicians (both pediatricians and subspecialists) and policymakers, and ultimately the value of care for this medically complex population.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Medicaid , Adolescente , Lactente , Estados Unidos/epidemiologia , Criança , Pré-Escolar , Humanos , Estudos Retrospectivos , Coração , Efeitos Psicossociais da Doença
18.
Health Aff (Millwood) ; 42(9): 1289-1297, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37669497

RESUMO

Climate change causes and exacerbates disease, creates and worsens health disparities, disrupts health care delivery, and imposes a significant disease burden in the US and globally. Critical knowledge gaps hinder an evidence-based response and are perpetuated by scarce federal research funds. We identified and described extramural US federal research funding (that is, grants provided to organizations and institutions outside of federal agencies) that both addressed health outcomes associated with climate change and was awarded between 2010 and 2020. During this eleven-year period, 102 grants met our criteria, totaling approximately $58.7 million, or approximately $5.3 million per year (2020 adjusted US dollars). Federal investments in climate change and health research during this period failed to address the breadth of climate-sensitive exposures, health outcomes, and impacts on vulnerable populations. Moving forward, in addition to increasing investment in climate and health research across all known hazards, critical attention should be placed on vulnerable populations and health equity. To achieve this, increased federal research coordination and cooperation are needed, as well as a mechanism to track this funding.


Assuntos
Distinções e Prêmios , Mudança Climática , Humanos , Efeitos Psicossociais da Doença , Órgãos Governamentais , Avaliação de Resultados em Cuidados de Saúde
19.
Front Public Health ; 11: 1193839, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37711236

RESUMO

Background: Young children have a great disease burden and are particularly vulnerable to influenza. This study aimed to assess the direct effect of influenza vaccination among children and to evaluate the indirect benefit of immunizing children. Methods: The influenza vaccination records for all children born during 2013-2019 in Minhang District and surveillance data for reported influenza cases were obtained from the Minhang CDC. 17,905 children were recorded in the vaccination system and included in this study. Descriptive epidemiology methods were used for data analysis, including an ecological approach to estimate the number of influenza cases averted by vaccination and linear regression to estimate the reduction in influenza cases in the general population per thousand additional childhood vaccination doses. Results: During the study period, the annual vaccination coverage rate ranged from 10.40% in 2013-2014 to 27.62% in 2015-2016. The estimated number of influenza cases averted by vaccination ranged from a low of 0.28 (range: 0.23-0.34) during 2013-2014 (PF: 6.15%, range: 5.11-7.38%) to a high of 15.34 (range: 12.38-18.51) during 2017-2018 (PF: 16.54%, range: 13.79-19.30%). When increasing vaccination coverage rate by 10% in each town/street, a ratio of 7.27-10.69% cases could be further averted on the basis of observed cases. In four selected periods, the number of influenza cases in the general population was most significantly correlated with the cumulative childhood vaccination doses in the prior 2-5 months, and the reduction in influenza cases ranged from 0.73 to 3.18 cases per thousand additional childhood vaccination doses. Conclusion: Influenza vaccination among children is estimated to have direct effects in terms of averted cases and might provide an underlying indirect benefit to the general population. Vaccination coverage in high-coverage areas should be further expanded to avert more influenza cases.


Assuntos
Influenza Humana , Humanos , Criança , Pré-Escolar , Influenza Humana/epidemiologia , Influenza Humana/prevenção & controle , Vacinação , Cobertura Vacinal , China/epidemiologia , Efeitos Psicossociais da Doença
20.
BMC Public Health ; 23(1): 1776, 2023 09 12.
Artigo em Inglês | MEDLINE | ID: mdl-37700251

RESUMO

BACKGROUND: There have been many prediction studies for imported infectious diseases, employing air-travel volume or the importation risk (IR) index, which is the product of travel-volume and disease burden in the source countries, as major predictors. However, there is a lack of studies validating the predictability of the variables especially for infectious diseases that have rarely been reported. In this study, we analyzed the prediction performance of the IR index and air-travel volume to predict disease importation. METHODS: Rabies and African trypanosomiasis were used as target diseases. The list of rabies and African trypanosomiasis importation events, annual air-travel volume between two specific countries, and incidence of rabies and African trypanosomiasis in the source countries were obtained from various databases. RESULTS: Logistic regression analysis showed that IR index was significantly associated with rabies importation risk (p value < 0.001), but the association with African trypanosomiasis was not significant (p value = 0.923). The univariable logistic regression models showed reasonable prediction performance for rabies (area under curve for Receiver operating characteristic [AUC] = 0.734) but poor performance for African trypanosomiasis (AUC = 0.641). CONCLUSIONS: Our study found that the IR index cannot be generally applicable for predicting rare importation events. However, it showed the potential utility of the IR index by suggesting acceptable performance in rabies models. Further studies are recommended to explore the generalizability of the IR index's applicability and to propose disease-specific prediction models.


Assuntos
Doenças Transmissíveis Importadas , Raiva , Humanos , Doenças Transmissíveis Importadas/epidemiologia , Raiva/epidemiologia , Efeitos Psicossociais da Doença , Bases de Dados Factuais , Fatores de Risco
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