Traducción y validación al español del módulo neuromuscular de la escala Pediatric Quality of Life Inventory (PedsQL): evaluación de la calidad de vida autopercibida por niños de 5-7 años con enfermedades neuromusculares y por sus padres

Validation of the Pediatric Quality of Life Inventory™, Neuromuscular Module, version 3.0 in Spanish for Argentina

“…Similar to other validations, the scores obtained by parents were lower than that of their children. 4,5,[7][8][9] Considering this, there was a poor correlation between the OPPCf and the child version of the questionnaire, which was not corroborated, although the value was close to the cutoff point. The poor correlation observed between the Vignos and Brooke scales and the functional domain "About my neuromuscular disease" and the differences noted when comparing HRQoL between ambulatory and non-ambulatory children indicate that patients are adapted to their condition and do not perceive it as an obstacle.…”

“…Both versions of the questionnaire showed an acceptable internal consistency, similar to what has been reported by other authors. [4][5][6][7][8][9][10] The test-retest results were acceptable and demonstrated that the questionnaire is reliable to assess clinically stable patients. The child version showed a lower reliability, mainly in the "Communication" and "About my family resources" domains.…”

“…Bach observed that caregivers' perception about the HRQoL of children with SMA type I is significantly higher than that perceived by their physicians. 38 Unlike the version for Spain, [7][8][9] the mean scores were >60 points, except for the "Communication" domain of the parent version for the 13-18-year group, which scored 55 points. As suggested by Girabent-Farré, this may be related to psychosocial and communication aspects typical of adolescence.…”

“…Several studies demonstrated that this questionnaire is reliable to measure HRQoL in patients with NMD aged 2-18 years. [4][5][6][7][8][9][10][11] Hospital Garrahan caters for more than 400 children from across the country who have genetically determined NMD as part of a multidisciplinary program that was started in 2006.…”

Validación del Cuestionario pediátrico de calidad de vida™ (Pediatric Quality of Life Inventory™) Módulo neuromuscular, versión 3.0 en español para Argentina

“…En diversos trabajos este cuestionario demostró ser confiable para medir CVRS en pacientes neuromusculares entre 2 y 18 años. [4][5][6][7][8][9][10][11] En el Hospital Garrahan se atienden más de 400 niños de todo el país con ENM genéticamente determinadas, en el marco del programa multidisciplinario que funciona desde 2006.…”