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1.
PLOS Digit Health ; 2(6): e0000269, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37384616

RESUMO

Early diagnosis is crucial for well-being and life quality of the rare disease patient. Access to the most complete knowledge about diseases through intelligent user interfaces can play an important role in supporting the physician reaching the correct diagnosis. Case reports may offer information about heterogeneous phenotypes which often further complicate rare disease diagnosis. The rare disease search engine FindZebra.com is extended to also access case report abstracts extracted from PubMed for several diseases. A search index for each disease is built in Apache Solr adding age, sex and clinical features extracted using text segmentation to enhance the specificity of search. Clinical experts performed retrospective validation of the search engine, utilising real-world Outcomes Survey data on Gaucher and Fabry patients. Medical experts evaluated the search results as being clinically relevant for the Fabry patients and less clinically relevant for the Gaucher patients. The shortcomings for Gaucher patients mainly reflect a mismatch between the current understanding and treatment of the disease and how it is reported in PubMed, notably in the older case reports. In response to this observation, a filter for the publication date was added in the final version of the tool available from deep.findzebra.com/ with = gaucher, fabry, hae (Hereditary angioedema).

2.
Respir Med ; 101(3): 539-46, 2007 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-16889949

RESUMO

This paper describes a population-based study of health care resource use of patients with chronic obstructive pulmonary disease (COPD) compared to non-COPD controls. Through a screening of the Danish Patient Registry for patients admitted with COPD diagnoses for a 5-year period, 1998-2002, 66,000 individuals with COPD still alive at the beginning of 2002 were identified. Their use of health care resources in 2002 were compared with equivalent data, stratified for age, sex and mortality rates, for a control population without COPD based on data for the 300,000 remaining patients on the Danish Patient Registry in 2002. Results indicated that the gross cost of treating patients with COPD in the Danish somatic hospital and primary health care sector corresponded to 10% of the total cost of treating patients of 40 years or more. The net cost for COPD patients was 1.9 billion DKK (256 million euro), 6% of the total annual costs of treating the population of 40 years or more. The gross cost related to any disease and the net cost reflected the resource use which could be attributed to COPD and its related diagnoses. The incidence of inpatient hospital admissions was almost four times higher in the COPD population than in the control group. COPD patients contacted their general practitioner 12 times more per year than non-COPD controls, but for specialist and paramedic treatment in the primary care sector there was no significant difference between COPD patients and non-COPD controls. Only one third of the COPD costs were due to treatment of COPD as the primary diagnosis. The remaining two-thirds of the COPD-related costs were mainly due to admissions for other diseases such as cardio-vascular diseases, other respiratory diseases, and cancer.


Assuntos
Custos de Cuidados de Saúde , Doença Pulmonar Obstrutiva Crônica/terapia , Adulto , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Assistência Ambulatorial/economia , Comorbidade , Dinamarca/epidemiologia , Feminino , Hospitalização/economia , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Vigilância da População/métodos , Atenção Primária à Saúde/economia , Doença Pulmonar Obstrutiva Crônica/economia , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Distribuição por Sexo
3.
Dan Med J ; 64(1)2017 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-28007050

RESUMO

INTRODUCTION: Spontaneous reporting of adverse drug reactions (ADRs) is used for continuous risk-benefit evaluation of marketed pharmaceutical products and for signal detection. The Adverse Drug Event Manager (ADEM) is a service offered to clinicians employed at hospitals in the Capital Region of Denmark. The ADEM assists healthcare professionals in reporting suspected ADRs to the Danish Health Authority. The aim of this retrospective observational study was to quantify and describe ADRs reported via the ADEM in 2014. METHODS: All ADR reports handled by the ADEM in 2014 were recorded anonymously and analysed descriptively. RESULTS: A total of 484 ADRs were reported through the ADEM in 2014 (the median number of reports per month was 37; range: 17-78). The majority of the reports came from departments of internal medicine (61%), psychiatry (14%) and dermatology, ophthalmology or otorhinolaryngology (11%). The drugs most frequently reported were lisdexamphetamine (n = 40), rivaroxaban (n = 16) and warfarin (n = 15) (vaccines excluded). In 13 out of 484 reports, the ADR was associated with a fatal outcome. CONCLUSION: The findings of this study indicate that an ADEM promotes and facilitates spontaneous ADR reporting and helps raise awareness about ADRs, including how and why they should be reported. Hopefully, this will assist national and European spontaneous reporting systems in their work to increase patient safety nationally and abroad. FUNDING: none. TRIAL REGISTRATION: not relevant. .


Assuntos
Sistemas de Notificação de Reações Adversas a Medicamentos/estatística & dados numéricos , Departamentos Hospitalares/estatística & dados numéricos , Hospitais/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Anticoagulantes/efeitos adversos , Estimulantes do Sistema Nervoso Central/efeitos adversos , Criança , Pré-Escolar , Dinamarca , Dermatologia/estatística & dados numéricos , Inibidores do Fator Xa/efeitos adversos , Feminino , Humanos , Lactente , Recém-Nascido , Medicina Interna/estatística & dados numéricos , Dimesilato de Lisdexanfetamina/efeitos adversos , Masculino , Pessoa de Meia-Idade , Oftalmologia/estatística & dados numéricos , Otolaringologia/estatística & dados numéricos , Vigilância de Produtos Comercializados/métodos , Unidade Hospitalar de Psiquiatria/estatística & dados numéricos , Estudos Retrospectivos , Rivaroxabana/efeitos adversos , Varfarina/efeitos adversos , Adulto Jovem
4.
Ugeskr Laeger ; 170(35): 2669-71, 2008 Aug 25.
Artigo em Dinamarquês | MEDLINE | ID: mdl-18761853

RESUMO

We investigated whether the quality of management of COPD in general practice could be improved by the participation of general practitioners and their staff in a COPD-specific educational programme. One-hundred and fifty-four doctors participated in the study, and 2549 patient record forms were included in the first audit and 2394 in the second audit. We observed a significantly increased utilisation of spirometry from the first (52.7%) to the second audit (71.4%) (p < 0,001) and improvement in other parameters describing the quality of management. We conclude that participation in an educational programme can improve the quality of COPD care in general practice.

5.
Prim Care Respir J ; 16(3): 174-81, 2007 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-17516009

RESUMO

AIM: We studied the quality of care for COPD patients in a large sample of general practices in Denmark. We focussed on whether participation by general practitioners (GPs) in an educational programme could enhance the use of spirometry in the diagnosis and staging of the disease and improve adherence to COPD guidelines. METHODS: We performed two audit surveys of GPs' patients' notes, one year apart, before and after an educational programme for participating GPs and their staff. A total of 154 GPs participated in the study. 2549 patient records were included in the first survey and 2394 in the second. RESULTS: Based on analysis of all patient records, we observed a substantial improvement in the quality of care: recording of FEV1 improved from 52.7% of cases in the first survey to 71.4% in the second (p< 0.001). There was a significant improvement in the recording of body mass index and provision of smoking cessation advice, recommendation of physical activity, checking of inhalation technique, dietary instruction, and referral to pulmonary rehabilitation. We also found a decline in the use of inhaled corticosteroids in patients with mild COPD, from 60.2% in the first survey to 48.8% in the second. When analysing the results focussing on the performance of single GPs there was an improvement in quality, but this was less than the improvement for patients overall - suggesting that improvement in quality of care was not equally distributed throughout the GPs' practices. CONCLUSION: We conclude that it is possible to improve the quality of COPD care by educating GPs and their staff.


Assuntos
Medicina de Família e Comunidade/normas , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/terapia , Garantia da Qualidade dos Cuidados de Saúde , Idoso , Dinamarca , Educação Médica Continuada , Medicina de Família e Comunidade/educação , Feminino , Fidelidade a Diretrizes , Humanos , Masculino , Auditoria Médica , Pessoa de Meia-Idade , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde , Espirometria
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