Quality of life in adults treated in infancy for hydrocephalus

Abstract

Purpose: The objective was to analyze quality of life in a very long-term follow-up study of now adult individuals, treated for hydrocephalus (without spina bifida) during infancy.

Methods: The entire series was population-based, and the subgroup under study consisted of the 29 individuals without intellectual disability, who consented to participate. About one third had concomitant mild cerebral palsy or epilepsy or both. A Finnish validated questionnaire, the 15D, was used to measure quality of life.

Results: There was no significant difference between the study group and the controls with regard to the total quality of life score. Individuals with associated cerebral palsy and/or epilepsy had a lower total score compared with both those without associated impairments and controls. Most participants differed from controls in the dimension of mental/memory function which pertains to executive functions, an ability of considerable importance for daily life skills.

Conclusion: It is important to follow children with hydrocephalus over time--due to the different etiological panorama, interventions, and associated impairments this group displays. This is the only way to learn more about critical factors that require attention and that predict quality of life in adulthood.

Fig. 1

Health-related quality-of-life profiles in 29 individuals with hydrocephalus and 1,613 controls. Mobility (move), vision (see), hearing (hear), breathing (breath), sleeping (sleep), eating (eat), speech (speech), elimination (elim), usual activities (uact), mental function (mental), discomfort and symptoms (disco), depression (depr), distress (distr), vitality (vital), and sexual activity (sex)

Fig. 2

Health-related quality-of-life profiles in nine individuals with cerebral palsy (CP) and/or epilepsy (EP), 20 without cerebral palsy or epilepsy, and 1,613 controls. Mobility (move), vision (see), hearing (hear), breathing (breath), sleeping (sleep), eating (eat), speech (speech), elimination (elim), usual activities (uact), mental function (mental), discomfort and symptoms (disco), depression (depr), distress (distr), vitality (vital), and sexual activity (sex)