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.