Analysis, determinants and impact of diagnostic delay in rare diseases (Q3149642): Difference between revisions
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(Created claim: summary (P836): Rare diseases (RDs) are characterised by great complexity, insidious onset, overlapping of different symptoms, chronicity, and many lack a definite diagnostic test, medical treatment and adequate social assistance. The reduction in diagnostic delay time and access to a correct diagnosis are one of the demands frequently expressed by those affected. In Spain, the diagnostic delay has been estimated in adults in approximately 5 years. The general...) |
(Changed label, description and/or aliases in fr: translated_label) |
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Analyse, déterminants et impact du retard diagnostique dans les maladies rares | |||
Revision as of 16:21, 2 December 2021
Project Q3149642 in Spain
| Language | Label | Description | Also known as |
|---|---|---|---|
| English | Analysis, determinants and impact of diagnostic delay in rare diseases |
Project Q3149642 in Spain |
Statements
18,300.0 Euro
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36,600.0 Euro
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50.0 percent
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1 January 2019
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31 March 2022
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FUNDACION PARA EL FOMENTO DE LA INV. SANITARIA Y BIOMEDICA DE LA COMUNIDAD VALENCIANA (FISABIO)
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39°28'10.96"N, 0°22'34.82"W
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46250
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Las enfermedades raras (ER) se caracterizan por tener gran complejidad, comienzo insidioso, solapamiento de diferentes síntomas, cronicidad y muchas carecen de una prueba diagnóstica definida, tratamiento médico y asistencia social adecuada. La disminución del tiempo de demora diagnóstica y el acceso a un diagnóstico correcto son unas de las demandas expresadas frecuentemente por los afectados. En España la demora diagnóstica se ha estimado, en adultos, en aproximadamente 5 años. El objetivo general es estimar con mayor precisión el tiempo de demora diagnóstica y las características que pueden condicionar la misma en los pacientes con ER en la Comunitat Valenciana (CV). También se pretende evaluar el impacto de la demora en términos de tratamiento inadecuado o agravamiento del estado, identificar la existencia de inequidades en acceso al diagnóstico, explorar las necesidades psicosociales relacionadas con la demora y proponer abordajes organizativos para mejorar el tiempo de diagnóstico. Para ello, partiendo de los casos de ER identificados en la Red Centinela Sanitaria (RCS) de la CV, se plantea un estudio de casos (245) y controles (445), con dos fases (cuantitativa y cualitativa) y dos subfases (cuestionario semiestructurado y grupos de discusión). Se realizará además una búsqueda activa en diferentes bases de datos sanitarias para para complementar y verificar los datos existentes en la RCS. Se estructurarán 5 grupos de discusión, 2 en casos y 2 en controles (infantiles y adultos) y otro con profesionales y gestores sanitarios expertos. Además de precisar más las estimaciones, se pretende dar respuesta a las demandas y defender los principios de inclusión en un subgrupo frágil de la sociedad, escuchando a los afectados por ER y analizando sus necesidades y aportando propuestas de soluciones. También se produce una aplicación real de la utilidad de los datos de diferentes sistemas con datos de ER, valorándose su capacidad de integración e interoperabilidad. (Spanish)
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Rare diseases (RDs) are characterised by great complexity, insidious onset, overlapping of different symptoms, chronicity, and many lack a definite diagnostic test, medical treatment and adequate social assistance. The reduction in diagnostic delay time and access to a correct diagnosis are one of the demands frequently expressed by those affected. In Spain, the diagnostic delay has been estimated in adults in approximately 5 years. The general objective is to estimate with greater precision the diagnostic delay time and the characteristics that may condition it in patients with RD in the Valencian Community (CV). It is also intended to evaluate the impact of the delay in terms of inadequate treatment or aggravation of the state, to identify the existence of inequities in access to the diagnosis, to explore the psychosocial needs related to the delay and to propose organizational approaches to improve the diagnostic time. To this end, based on the cases of ER identified in the Sanitary Sentinel Network (SCR) of the SC, a study of cases (245) and controls (445), with two phases (quantitative and qualitative) and two subphases (semi-structured questionnaire and discussion groups) is proposed. In addition, an active search will be carried out in different health databases to complement and verify the existing data in the CSR. 5 focus groups will be structured, 2 in cases and 2 in controls (children and adults) and another with expert health professionals and managers. In addition to further specifying the estimates, the aim is to respond to the demands and defend the principles of inclusion in a fragile subgroup of society, listening to those affected by ER and analysing their needs and providing proposals for solutions. There is also a real application of the usefulness of data from different systems with ER data, assessing their integration and interoperability capacity. (English)
12 October 2021
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Valencia
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Identifiers
PI18_01290
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