[Current situation of children with medical complexity: An experience between primary and hospital care]. / Situación actual del paciente pediátrico con patología crónica compleja: una experiencia entre atención primaria y hospitalaria.

OBJECTIVE: To analyze the assessment of the care of children with medical complexity (CMC) in Primary Care (PC), from the point of view of their doctors and their families. DESIGN: Observational, descriptive and transversal study. SITE: PC Pediatrics and Complex Chronic Pathology Unit (UPCC) of Hospital Universitario La Paz (HULP). PARTICIPANTS: Patients and relatives of the UPCC and their PC physicians of the Community of Madrid (CAM). INTERVENTIONS: Face-to-face and online validated surveys were conducted. MAIN MEASUREMENTS: Degree of satisfaction in the training, education and specific management of the CMC according to Likert-type scales. RESULTS: Fifty-three families and 170 PC physicians (96.5% pediatricians) were surveyed. The results of the family survey reveal lack of coordination between levels of care (73.6%), little confidence in the first level of care, and an impression of poor problem-solving capacity by PC pediatricians (50%). Among PC physicians, there is little training in the follow-up of CMC (96.5%), little experience in their management (93%) and insufficient communication with the hospital (80.5%). Lack of time in consultations is a common problem, perceived by pediatricians and patients. CONCLUSIONS: The lack of coordination between PC and Hospital Care is detected as an important problem in the continuity of care at CMC. Interventions are needed to improve this coordination. The PC is close to the family but needs to improve the education and training of professionals in health problems and technical support from CMC, as well as increase the time necessary for their care.

El niño con patología crónica y complejidad: ¿cuál es el camino? / Children with medical complexity. What is the way?

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Situación actual del paciente pediátrico con patología crónica compleja: una experiencia entre atención primaria y hospitalaria / Current situation of children with medical complexity: An experience between primary and hospital care

Objetivo: Analizar la valoración de la atención a los niños con patología crónica compleja (NPCC) en atención primaria (AP), desde el punto de vista de sus médicos y de sus familias. Diseño: Estudio observacional, descriptivo y transversal. Emplazamiento: Pediatría de AP y unidad de patología crónica compleja (UPCC) del Hospital Universitario La Paz (HULP). Participantes: Pacientes y familiares de la UPCC y sus médicos de AP de la Comunidad de Madrid (CAM). Intervenciones: Realización de encuestas validadas presenciales y online. Mediciones principales: Grado de satisfacción en la formación, capacitación y manejo específico del NPCC según escalas tipo Likert. Resultados: Se encuestaron 53 familias y 170 médicos de AP (96,5% pediatras). Los resultados de la encuesta a familiares revelan descoordinación entre niveles asistenciales (73,6%), escasa confianza en el primer nivel asistencial e impresión de poca capacidad de resolución de problemas por parte de pediatría de AP (50%). Entre los médicos de AP destaca la poca formación para el seguimiento de los NPCC (96,5%), escasa experiencia en su manejo (93%) e insuficiente comunicación con el hospital (80,5%). La falta de tiempo en las consultas es un problema común, percibido por pediatras y pacientes. Conclusiones: La falta de coordinación entre AP y atención hospitalaria (AH) se detecta como un problema importante en la continuidad asistencial de NPCC. Son necesarias intervenciones que mejoren esta coordinación. La AP es cercana a la familia, pero precisa mejorar la formación y capacitación de los profesionales en problemas de salud y soporte tecnificado de NPCC, así como incrementar el tiempo necesario para su atención.(AU)

Objective: To analyze the assessment of the care of children with medical complexity (CMC) in Primary Care (PC), from the point of view of their doctors and their families. Design: Observational, descriptive and transversal study. Site: PC Pediatrics and Complex Chronic Pathology Unit (UPCC) of Hospital Universitario La Paz (HULP). Participants: Patients and relatives of the UPCC and their PC physicians of the Community of Madrid (CAM). Interventions: Face-to-face and online validated surveys were conducted. Main measurements: Degree of satisfaction in the training, education and specific management of the CMC according to Likert-type scales. Results: Fifty-three families and 170 PC physicians (96.5% pediatricians) were surveyed. The results of the family survey reveal lack of coordination between levels of care (73.6%), little confidence in the first level of care, and an impression of poor problem-solving capacity by PC pediatricians (50%). Among PC physicians, there is little training in the follow-up of CMC (96.5%), little experience in their management (93%) and insufficient communication with the hospital (80.5%). Lack of time in consultations is a common problem, perceived by pediatricians and patients. Conclusions: The lack of coordination between PC and Hospital Care is detected as an important problem in the continuity of care at CMC. Interventions are needed to improve this coordination. The PC is close to the family but needs to improve the education and training of professionals in health problems and technical support from CMC, as well as increase the time necessary for their care.(AU)