Barreras al acceso de los servicios de salud a las personas con enfermedades huérfanas o raras en el departamento del Huila, Colombia.

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Bibliographic Details
Title:	Barreras al acceso de los servicios de salud a las personas con enfermedades huérfanas o raras en el departamento del Huila, Colombia.
Alternate Title:	Barriers to access to health services for people with orphan-rare diseases in Huila, Colombia.
Authors:	Troche, Ingrid Yolercy¹, González, William², Montealegre, Anyi Daniela², Andrade, Brayant¹ brayant.andrade@usco.edu.co
Source:	Biomédica: Revista del Instituto Nacional de Salud. jun2026, Vol. 46 Issue 2, p254-269. 16p.
Subjects:	HEALTH services accessibility, RURAL health, RARE diseases, GEOGRAPHICAL positions, SOCIOECONOMIC factors, GUILLAIN-Barre syndrome
Geographic Terms:	COLOMBIA
Abstract (English):	Introduction. Despite the obligation to provide priority and timely care to people with orphan diseases, they continue to find barriers to health services. Objective. To determine access to health services barriers for people diagnosed with orphan or rare diseases. Materials and methods. We carried out a cross-sectional analytical study based on secondary data of 134 people reported with orphan or rare diseases in the department of Huila. Sociodemographic and clinical characterization and identification of barriers to access to health services at the geographic, economic, social, knowledge, cultural and health care levels were carried out. Statistical analysis was performed in Stata 15™ using measures of central tendency and association. Results. The median age was 15 years, 51.5% were male, 61.9% lived in urban areas, low income predominated, the most prevalent diagnosis was Guillain-Barré syndrome and 32.8% required hospitalization for complications of the disease. Living in rural areas presents a greater probability of having limited access to the center of care (OR = 10.7; 95% CI: 4.3-27) and lack of money for transportation (OR = 2.84; 95% CI: 1.26-6.52). Statistical association between subsidized regime and non-delivery of medicines (OR = 4.59; 95% CI: 1.44-19.17) was found. Conclusion. Participants face significant barriers to accessing health services associated with living in rural areas and their affiliation status. [ABSTRACT FROM AUTHOR]
Abstract (Spanish):	Introducción. A pesar de la obligatoriedad de brindar atención prioritaria y oportuna a las personas con enfermedades huérfanas o raras, esta población continúa encontrando barreras al acceso de los servicios de salud. Objetivo. Identificar las barreras al acceso de los servicios de salud para las personas con diagnóstico de enfermedades huérfanas o raras en el departamento del Huila, 2022. Materiales y métodos. Se trata de un estudio transversal analítico a partir de datos secundarios de 134 personas con diagnóstico de una enfermedad huérfana o rara en el departamento del Huila. Se hizo caracterización sociodemográfica y clínica; además, se identificaron las barreras para el acceso a los servicios de salud a nivel geográfico, económico, social, de conocimiento y cultura, y aquellas propias de la atención en salud. El análisis estadístico con medidas de tendencia central y de asociación en Stata 15™. Resultados. La mediana de edad fue de 15 años, el 51,5 % era de sexo masculino y el 61,9 % vivía en el área urbana y de ingresos económicos bajos. El diagnóstico más prevalente fue el de síndrome de Guillain-Barré y el 32,8 % requirió hospitalización por complicaciones de la enfermedad. El vivir en el área rural implicó mayores probabilidades de presentar limitaciones para llegar al centro de atención (OR = 10,7; IC95%: 4,3-27) y escasez de dinero para transportarse (OR = 2,84; IC95%: 1,26-6,52). Hubo asociación estadística entre el régimen subsidiado y la falta de entrega de los medicamentos (OR = 4,59; IC95%: 1,44-19,17). Conclusión. Los participantes enfrentan barreras significativas de acceso a los servicios de salud asociados con vivir en el área rural y el régimen de afiliación. [ABSTRACT FROM AUTHOR]
	Copyright of Biomédica: Revista del Instituto Nacional de Salud is the property of Instituto Nacional de Salud of Colombia and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database:	MedicLatina

Description
Abstract:	Introduction. Despite the obligation to provide priority and timely care to people with orphan diseases, they continue to find barriers to health services. Objective. To determine access to health services barriers for people diagnosed with orphan or rare diseases. Materials and methods. We carried out a cross-sectional analytical study based on secondary data of 134 people reported with orphan or rare diseases in the department of Huila. Sociodemographic and clinical characterization and identification of barriers to access to health services at the geographic, economic, social, knowledge, cultural and health care levels were carried out. Statistical analysis was performed in Stata 15™ using measures of central tendency and association. Results. The median age was 15 years, 51.5% were male, 61.9% lived in urban areas, low income predominated, the most prevalent diagnosis was Guillain-Barré syndrome and 32.8% required hospitalization for complications of the disease. Living in rural areas presents a greater probability of having limited access to the center of care (OR = 10.7; 95% CI: 4.3-27) and lack of money for transportation (OR = 2.84; 95% CI: 1.26-6.52). Statistical association between subsidized regime and non-delivery of medicines (OR = 4.59; 95% CI: 1.44-19.17) was found. Conclusion. Participants face significant barriers to accessing health services associated with living in rural areas and their affiliation status. [ABSTRACT FROM AUTHOR]
ISSN:	01204157
DOI:	10.7705/biomedica.7991