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Diagnóstico situacional de la Clínica de atención integral de Enfermedades Lisosomales en el Instituto Nacional de Pediatría.

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Title: Diagnóstico situacional de la Clínica de atención integral de Enfermedades Lisosomales en el Instituto Nacional de Pediatría.
Alternate Title: Situational diagnosis of the comprehensive care Clinic for Lysosomal Diseases at the National Institute of Pediatrics.
Authors: Loredo Abdalá, Arturo1 cainm_inp@hotmail.com, Romero Pérez, Soledad2, Díaz García, María Luisa3, Carbajal Rodríguez, Luis4, Rodríguez Herrera, Raymundo5, Trejo Hernández, Jorge5, Zúñiga Morales, Dulce Yendi6
Source: Acta Pediatrica de Mexico. ene-dic2026, Vol. 47 Issue 1, p1-7. 7p.
Subjects: SWOT analysis, PATIENT care, RARE diseases, INTEGRATED health care delivery, BURDEN of care, PEDIATRICS, THERAPEUTICS, LYSOSOMAL storage diseases
Abstract (English): BACKGROUND: Patients with lysosomal diseases should receive comprehensive care. The National Institute of Pediatrics has a Lysosomal, Rare, and Degenerative Diseases Clinic (CEL). MATERIAL AND METHOD: A descriptive, observational, and retrospective study of 58 patients with LD. By reviewing the medical records of patients treated at the CEL from 2002 to 2004, medical and sociodemographic variables identified as risk factors and/or protective factors were documented. The situational diagnosis obtained using the SWOT matrix allowed us to establish which factors acted as strengths, weaknesses, opportunities, and threats during medical and social care. RESULTS: Fifty-eight patients with eight different LDs were included, with an age range of 1 to 17 years. The SWOT analysis highlights aspects related to the patient and the primary caregiver. As a strength, most cases have the support of a primary care network for the patient's care, while one of the weaknesses is the presence of primary caregiver syndrome. The most notable opportunity is the government subsidy through the Free Social Program for Medical Care, with the most significant threat being reaching adulthood. CONCLUSION: The SWOT analysis allowed us to identify threats and opportunities, providing a more complete picture, allowing us to make more appropriate recommendations to patients and adjust within the care process. We also incorporated, to the extent possible, technological and scientific advances in the treatment of the disease. [ABSTRACT FROM AUTHOR]
Abstract (Spanish): ANTECEDENTES: Los pacientes con Enfermedades Lisosomales (EL) deben recibir una atención integral. En el Instituto Nacional de Pediatría se cuenta con la Clínica de Enfermedades Lisosomales (CEL), Raras y Degenerativas (RD). MATERIAL Y MÉTODO: Estudio descriptivo, observacional y retrospectivo de 58 pacientes con una EL. Mediante la revisión de los expedientes clínicos de los pacientes atendidos en la CEL de 2002 al 2004 se documentaron variables médicas y sociodemográficas identificadas como factores de riesgo y/o factores protectores. El diagnostico situacional obtenido con la matriz FODA permitió establecer qué factores actuaban como fortalezas, debilidades, oportunidades y amenazas durante la atención médico-social. RESULTADOS: Se incluyeron 58 pacientes con 8 distintas EL, con un rango de edad de 1 a 17 años. En el análisis FODA destacan los aspectos relacionados al paciente y al cuidador primario. Como fortaleza la mayoría de los casos cuentan con el apoyo de una red primaria para el cuidado del paciente, siendo una de las debilidades la presencia del síndrome del cuidador primario. La oportunidad que más destaca es el subsidio gubernamental a través del Programa Social de Gratuidad para la atención médica, siendo la amenaza más relevante alcanzar la mayoría de edad. CONCLUSION: El análisis de la matriz FODA, nos permitió identificar amenazas y oportunidades, en un panorama más completo para poder hacer recomendaciones más adecuadas a los pacientes y para hacer ajustes dentro del proceso de atención, así como incorporar en la medida de los posible los avances tecno-científicos en el tratamiento de la enfermedad. [ABSTRACT FROM AUTHOR]
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Database: MedicLatina
Description
Abstract:BACKGROUND: Patients with lysosomal diseases should receive comprehensive care. The National Institute of Pediatrics has a Lysosomal, Rare, and Degenerative Diseases Clinic (CEL). MATERIAL AND METHOD: A descriptive, observational, and retrospective study of 58 patients with LD. By reviewing the medical records of patients treated at the CEL from 2002 to 2004, medical and sociodemographic variables identified as risk factors and/or protective factors were documented. The situational diagnosis obtained using the SWOT matrix allowed us to establish which factors acted as strengths, weaknesses, opportunities, and threats during medical and social care. RESULTS: Fifty-eight patients with eight different LDs were included, with an age range of 1 to 17 years. The SWOT analysis highlights aspects related to the patient and the primary caregiver. As a strength, most cases have the support of a primary care network for the patient's care, while one of the weaknesses is the presence of primary caregiver syndrome. The most notable opportunity is the government subsidy through the Free Social Program for Medical Care, with the most significant threat being reaching adulthood. CONCLUSION: The SWOT analysis allowed us to identify threats and opportunities, providing a more complete picture, allowing us to make more appropriate recommendations to patients and adjust within the care process. We also incorporated, to the extent possible, technological and scientific advances in the treatment of the disease. [ABSTRACT FROM AUTHOR]
ISSN:01862391
DOI:10.18233/apm.v47i1.3203