Clinicopathological characterization of children with dysphagia, family impact and health-related quality of life of their caregivers.

INTRODUCTION: Oropharyngeal dysphagia (DOF) without proper evaluation can be underdiagnosed in certain groups of the pediatricpopulation. Meeting the needs of these patients can lead to an overload of their caregivers. OBJECTIVES: To describe the epidemiological and clinical characteristics of the patients evaluated after starting a monographic DOF clinic (C-DOF) and study whether there are changes at the nutritional level, as well as the burden and impact that caregivers find on quality of life related to health (HRQL). MATERIAL AND METHODS: Descriptive observational study of patients evaluated in a C-DOF from its start-up. To evaluate HRQoL, an ad hoc survey adapted from the Swallowing Quality of Life Questionnaire of the adult population was designed. RESULTS: 103 patients were evaluated, 85.4% presenting some neurological disease. A videofluoroscopic study was performed in 51 patients (49.5%), reporting combined alterations in both the oral and pharyngeal phases in 64.7% of them. There was a directly proportional correlation between the severity of the DOF and the presence of aspirations, as well as with the patient's motor impairment. Regarding the anthropometric evaluation, there was a trend towards improvement in weight z-score (+0.14 SD), height (+0.17 SD) and BMI (+0.16 SD). Out of 46.2% of the caregivers reported that the DOF problem interfered negatively in the basic activities of daily life. The increase in HRQOL, after the evaluation in the monographic DOF clinic, was statistically significant overall. CONCLUSIONS: The monographic DOF clinic provided specialized care, impacting positively at the nutritional status of patients, as well as perceived changes in HRQOL, with a probable impact on caregivers.

[Clinicopathological characterization of children with dysphagia, family impact and health-related quality of life of their caregivers]. / Caracterización clínico-patológica de niños con disfagia, impacto familiar y calidad de vida de sus cuidadores.

INTRODUCTION: Oropharyngeal dysphagia (DOF) without proper evaluation can be underdiagnosed in certain groups of the pediatric population. Meeting the needs of these patients can lead to an overload of their caregivers. OBJECTIVES: To describe the epidemiological and clinical characteristics of the patients evaluated after starting a monographic DOF clinic (C-DOF) and study whether there are changes at the nutritional level, as well as the burden and impact that caregivers find on quality of life related to health (HRQOL). MATERIAL AND METHODS: Descriptive observational study of patients evaluated in a C-DOF from its start-up. To evaluate HRQOL, an ad hoc survey adapted from the Swallowing Quality of Life Questionnaire of the adult population was designed. RESULTS: 103 patients were evaluated, 85.4% presenting some neurological disease. A videofluoroscopic study was performed in 51 patients (49.5%), reporting combined alterations in both the oral and pharyngeal phases in 64.7% of them. There was a directly proportional correlation between the severity of the DOF and the presence of aspirations, as well as with the patient's motor impairment. Regarding the anthropometric evaluation, there was a trend toward improvement in weight z-score (+0.14 SD), height (+0.17 SD) and BMI (+0.16 SD). Out of 46.2% of the caregivers reported that the DOF problem interfered negatively in the basic activities of daily life. The increase in HRQOL, after the evaluation in the monographic DOF clinic, was statistically significant overall. CONCLUSIONS: The monographic DOF clinic provided specialized care, impacting positively at the nutritional status of patients, as well as perceived changes in HRQOL, with a probable impact on caregivers.