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.

Prevalence of lower urinary tract symptoms in school-age children

“…Therefore their parents must be adequately oriented regarding the need for a psychological approach [33]. Also, evaluation of quality of life of children and adolescents with LUTD found that such children share positive perceptions toward their family life and their playtime but tend to develop an introspective behavior in relation to their peers because they fear discrimination that may result from exposure of their dysfunction [34].…”

Self-Reported Quality of Life of Young Children With Conditions From Early Infancy: A Systematic Review

“…31 In other studies, children with sickle cell disease, spinabifida,Duchenne muscular dystrophy (DMD), bladder exstrophy, lower urinary tract dysfunction, and congenital hearing impairment reported impaired QoL compared with the general population or age-matched control children (Table 2). 29,32,[41][42][43][44] Perceived QoL in boys with DMD measured by using PedsQL was lower for all domains, except for the emotional domain, compared with unaffected age-matched control subjects. 32 However, for boys aged ,10 years, QoL for social, emotional, or school domains was comparable to control subjects.…”

Health-related quality of life in patients with pediatric onset of end-stage renal disease: state of the art and recommendations for clinical practice

“…Due to small number of patients, most studies could not draw any conclusion about the impact of individual comorbidities. However, in particular, comorbidities that tend to represent an obstacle to social activities, such as urological malformations leading to urinary incontinence and the necessity of undergoing catheterization, may be prone to negatively affect HRQoL [37, 38]. …”