Technology depended children with chronic respiratory problems. Do they benefit from home care?

Abstract

Quality of life (QoL) is an essential outcome for the management of the children with chronic respiratory problems that are technology depended. Home care programs reported to improve their QoL The aim of the study was to evaluate QoL of the children and their parents who entered a hospital based home care program. Children with chronic respiratory problems due to chronic pulmonary diseases, congenital syndromes, neuromuscular, metabolic and neurologic disorders, who are technology depended entered prospectively in a hospital based home care program. The program was covered by two nurses and two physiotherapists who visited homes on a regular weekly basis and are referred to a tertiary Paediatric Department. QoL DISABKIDS SMILEYS questionnaire for children with chronic disabilities and the equivalent for parents were completed on entry and a year later. DISABKIDS questionnaire for children with cerebral palsy was completed from the parents of the children with cerebral palsy. 22 children entered the study. 8/22, mean age 5.31 years, were children with respiratory problems due to cerebral palsy. 14/22, mean age 4.07 years, with other problems. QoL questionnaire completed from the parents of the children with cerebral palsy didn9t show improvement a year later (p=0.275). QoL of the children and their parents with other disorders improved a year later (children: t(9)=3.674, p=0.005), (parents: t(9)=4.146, p=0.002). QoL of the children and their families with technology depended chronic respiratory problems improved significantly by their entry on a hospital based home care program. It was not the same for those with respiratory problems due to cerebral palsy.