title: Quality of life of pediatric patients with lower urinary tract dysfunction and their caregivers.
abstract: The interest in quality of life (QoL) studies has increased as they are useful instruments to evaluate and compare medical care delivery and the impact of health interventions. The perception of QoL differs among individuals. Its characterization is especially difficult in the pediatric age group as each developmental stage presents specific demands. The prevalence of congenital lower urinary dysfunction is high and their management changes the daily routine of the patients and their families. In a cross-sectional study, we evaluated the QoL of 28 children and adolescents with urinary malformations and their caregivers using the Autoquestionnaire Qualité de Vie Enfant Imagé (AUQUEI) and Short-Form 36 (SF-36), respectively, and compared the results with 38 healthy control age-paired children/caregivers. Four questions were added to patients' questionnaire to evaluate issues related to their urological management. Our results show lower AUQUEI total scoring in the patients' group (p<0.0213, Fisher's exact test), who also present problems in dealing with social aspects, such as being at classroom, manifest negative feelings in relation to diurnal urinary losses but seem to be well adapted to intermittent urethral catheterization. A tendency for worse QoL scores in the patients' group caregivers was detected in the SF-36 pain and physical limitation domains.
authors.affiliation: Instituto da Criança-HCFMUSP - Pediatrics, Av Dr Eneas Carvalho de Aguiar 647, 05403-000, São Paulo, Brazil.
authors.forename: Marcos
authors.initials: M
authors.lastname: Lopes
authors.forename: Alexandre
authors.initials: A
authors.lastname: Ferraro
authors.forename: Ulysses
authors.initials: U
authors.lastname: Dória Filho
authors.forename: Evelyn
authors.initials: E
authors.lastname: Kuckzinski
authors.forename: Vera H
authors.initials: VH
authors.lastname: Koch
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014570:Urologic Diseases / Q000523:psychology*