Determinación de las necesidades de la calidad de atención en salud de pacientes con enfermedades raras en Norte de Santander
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Fecha
2022
Autores
Gomez Morales, Maria Camila
Morales Velandia, Judith Patricia
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Ediciones Universidad Simón Bolívar
Facultad de Administración y Negocios
Facultad de Administración y Negocios
Resumen
Antecedentes: Las enfermedades raras (ER), son patologías de baja prevalencia, de frecuente origen genético, potencialmente mortales, heterogéneas, crónicas, progresivas debilitantes, y con diagnóstico y tratamientos de alta complejidad. En Colombia las ER tienen una prevalencia menor de 1 por cada 5000 personas. Estos eventos son un reto en salud pública y para pacientes y familiares generan múltiples problemas sociales, económicos y con el manejo de la enfermedad en el sistema de salud que no han sido estudiados en la región. El objetivo de este estudio fue determinar las necesidades de calidad de atención de los pacientes con enfermedades raras en el Norte de Santander. Metodología: Una investigación de tipo mixto con predominio cuantitativo, de diseño de campo no experimental con apoyo bibliográfico, se utilizó muestreo no probabilístico por conveniencia, se diseñó y validó un instrumento para pacientes y cuidadores, quienes lo diligenciaron en línea. Se aplicaron cuestionarios estructurados a representantes de fundaciones de pacientes y empresas aseguradoras de salud.
Resultados: Participaron 18 pacientes. La edad promedio fue 21 años, 72% estrato socioeconómico bajo, las enfermedades reportadas fueron espondilitis anquilosante (16,7%), mucopolisacaridosis tipo IV, fibrosis quística y trisomía 18, (cada una 11,1%). Con discapacidad motora (33%) y retardo psicomotor (27,8%), un 66% de pacientes son atendidos en domicilio por 24 horas por cuidadores mujeres, 88% es la madre y un 77,7% debe disponer de recursos propios para atender la enfermedad. En cuanto a calidad de atención, el 83% refiere haber recibido y comprender información de su enfermedad. La oportunidad de consulta fue calificada como buena en solo el 38%, a pesar de que el tiempo para la primera consulta fue de 1 a 3 meses (44%), el cumplimiento de tratamientos fue calificado bueno por el 33% que lleva 5 años recibiendo tratamiento, solo un 11% refirió no estar recibiendo tratamiento, la entrega de medicamentos fue regular para el 33,3%, el acceso a tratamiento especializado fue bueno para el 61%. El tiempo para el diagnóstico fue un año para el 55%. Las fundaciones confirmaron las necesidades de apoyo de los pacientes en asuntos legales, aspectos sociales, manejo de la enfermedad y educación. Las aseguradoras refirieron contar con rutas, y equipos especializados para atención, dificultades en oportunidad de consultas y diagnósticos. Conclusiones: Los pacientes con enfermedades raras enfrentan necesidades de atención en salud que son apoyados por sus familiares y fundaciones de pacientes y tienen necesidades de calidad de atención que deben ser mejoradas con apoyo de los actores del sistema de salud. Se plantearon consideraciones para mejorar los hallazgos encontrados.
Background: The rare diseases (RD), are low prevalence pathologies, they are usually genetic diseases, life-threatening, chronic, progresive, weakening, diverse, and they have high degree diagnosis and treatment. In Colombia RDs have a prevalence of fewer than 5000 people. These events are a challenge in public health and they give multiple social, economic problems to patients and their families and to health administration`s subjects that were not studied before in the area. The objective was to determine the attention quality requirements of RD`s patients in North of Santander. Methodology: It is a mixed research mainly quantitative, the design was not experimental camp with biographical help, used not probabilistic sampling, convenience sample, validated and designed a patients and care`s on-line tool, applied structured questionnaires to Foundation`s representatives and health care insurance company. Results: A total of 18 patients, The average`s age was 21 years, 72% low socioeconomic level, the important diseases were ankylosing spondylitis (16,7%), mucopolisacaridosis IV, quistic fibrosis and 18 trisomy (11,1% each one), motore disability (38%), and psychomotor delay (27,8%), 66% patients had women care 24 hours per day, 88% were patient`s mothers and 77% needed to use own resources to health requirements. Health`s quality attention: 83% referenced to got and understood the disease`s information. The appointment`s opportunity was qualified as good in 38%, however the time for first medical appointment was 1 to 3 months (44%), the treatment was qualified as good by 33% that had it since 5 years ago, 11% referred had not treatment, medical delivery`s qualify was regular for 33,3%, specialized treatment was good for 61%. The diagnosis time was 1 year in 55% of the patients. Foundation`s reports patient`s need in legal and social subjects, education and disease control. Health care insurance company referred have ways and specialized teams for healthcare, however diagnosis and opportunity`s challenge. Conclusions: The RD`s patients that have attention health problems have family and foundations help, although that had to improve with healthcare providers. Proposed improvement suggests.
Background: The rare diseases (RD), are low prevalence pathologies, they are usually genetic diseases, life-threatening, chronic, progresive, weakening, diverse, and they have high degree diagnosis and treatment. In Colombia RDs have a prevalence of fewer than 5000 people. These events are a challenge in public health and they give multiple social, economic problems to patients and their families and to health administration`s subjects that were not studied before in the area. The objective was to determine the attention quality requirements of RD`s patients in North of Santander. Methodology: It is a mixed research mainly quantitative, the design was not experimental camp with biographical help, used not probabilistic sampling, convenience sample, validated and designed a patients and care`s on-line tool, applied structured questionnaires to Foundation`s representatives and health care insurance company. Results: A total of 18 patients, The average`s age was 21 years, 72% low socioeconomic level, the important diseases were ankylosing spondylitis (16,7%), mucopolisacaridosis IV, quistic fibrosis and 18 trisomy (11,1% each one), motore disability (38%), and psychomotor delay (27,8%), 66% patients had women care 24 hours per day, 88% were patient`s mothers and 77% needed to use own resources to health requirements. Health`s quality attention: 83% referenced to got and understood the disease`s information. The appointment`s opportunity was qualified as good in 38%, however the time for first medical appointment was 1 to 3 months (44%), the treatment was qualified as good by 33% that had it since 5 years ago, 11% referred had not treatment, medical delivery`s qualify was regular for 33,3%, specialized treatment was good for 61%. The diagnosis time was 1 year in 55% of the patients. Foundation`s reports patient`s need in legal and social subjects, education and disease control. Health care insurance company referred have ways and specialized teams for healthcare, however diagnosis and opportunity`s challenge. Conclusions: The RD`s patients that have attention health problems have family and foundations help, although that had to improve with healthcare providers. Proposed improvement suggests.
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Palabras clave
Enfermedades raras, Necesidades en Servicios de Salud, Garantía de la Calidad de Atención en Salud, Rare disease, Health services needs, Quality Assurance, Health care
