Calidad de vida familiar en pacientes con síndrome de Morquio tipo IV-A. Una mirada desde el contexto colombiano (Suramérica)

Abstract

IntroductionIn Colombia, people with rare diseases face multiple barriers to accessing health services. The Colombian Association of Patients with Lysosomal Storage Disease supports people with Morquio syndrome and their families in the search for solutions for an integral management with the aim of improving their quality of life and that of their families. Material and methodsWe analysed the Quality of Family Life of patients with Morquio type iv-A syndrome. A total of 102 patients with a diagnosis of Morquio syndrome from 81 families affiliated with the association participated in this study. The Family Life Quality Scale adapted for Colombia was applied to their caregivers. ResultsThe results of the Family Quality of Life Map demonstrated that the families were satisfied with their quality of life. Strong satisfaction was found for the factors related to internal family dynamics; however, satisfaction was less strong for the factors mainly related to elements external to the family. ConclusionThe integral view of quality of life obtained with the family quality of life model can identify elements of the environment that negatively influence family quality of life, allowing better targeting of actions.