In the September issue of Revista Paulista de Pediatria, researchers from Pontifícia Universidade Católica do Rio Grande do Sul (PUCRS) published a study analyzing the value of the World Health Organization Quality of Life questionnaire (WHOQOL) in assessing the quality of life of parents of children with asthma.
In their study, the authors highlighted that asthma is a chronic disease with high prevalence in children and whose appropriate control and treatment require the joint effort of children, relatives, and health care professionals. However, the management of asthma is difficult. One of the factors that lead to low treatment adherence is inadequate knowledge of caregivers with regard to preventive drugs for asthma. In turn, lack of treatment adherence results in uncontrolled asthma, causing many complications for children and their caregivers and leading to impaired quality of life for both of them. In this sense, the objective of the study conduced at PUCRS was to evaluate the quality of life of parents caring for asthmatic children on outpatient follow-up at a reference center in southern Brazil. Since there is no specific instrument to assess the quality of life of caregivers of children with asthma, the secondary objective of the study was to assess the internal consistency of the WHOQOL instrument, abbreviated version (WHOQOL-BREF) in order to determine if this instrument is valid for the study group.
The study included parents caring for children with medical diagnosis of asthma on outpatient follow-up at a reference center in pediatric asthma and parents of clinically healthy children. Inclusion criteria comprised parents of children with medical diagnosis of asthma and on outpatient follow-up for at least 12 months and parents of healthy children who had no direct contact with asthma, e.g., another child with the disease.
"Our study revealed that parents or guardians of asthmatic children have lower quality of life than caregivers of healthy children," said Cristian Roncada, one of the authors of the study. According to Roncada, psychometric evaluations are required for the application of instruments to assess behavioral profiles or levels in the scientific or clinical context, in order to investigate whether these instruments achieve their intended assessment or measurement purpose. "In the case of this study, it is worth highlighting that we described the validation of a generic instrument to assess the quality of life of parents or caregivers of asthmatic children. So far, quality of life studies have focused on patients with asthma, in an attempt to investigate health-related quality of life, i.e., the extent to which the disease interferes with the quality of life of patients (children). However, none of these studies has focused on children's parents or caregivers, which is an important issue to address, since parents and family members are the main agents and mediators of the control and management of asthma in children," tells Roncada.
"Asthma is a highly prevalent chronic disease that, although incurable, can be controlled according to current guidelines. However, this control cannot be achieved only by distributing medication. Studies focusing on themes such as education, impact, and knowledge of the disease and on quality of life levels are important to assess the effectiveness of the regulation and control of asthma," concludes the author.
The study was conducted with the support of PUCRS
Instituto de Pesquisas Biomédicas, Laboratório de Respirologia Pediátrica – Porto Alegre (RS)