Adult long-term health-related quality of life of congenital hydrocephalus patients.
OBJECTIVE
Congenital hydrocephalus has a major impact on the lives of patients and their relatives, as well as their long-term neurological development and social integration. The aim of this study was to assess the self-reported health-related quality of life (HRQOL) of patients after reaching adulthood.


METHODS
A total of 31 patients who required CSF shunt treatment for congenital hydrocephalus within the 1st year of life (between 1963 and 1987) agreed to undergo a structured SF-36 self-assessment. An age-matched German standard cohort was used as control. Additional parameters of surgical, social, and global neurological outcome were analyzed. The mean patient age was 35 years (range 26-51 years, 13 females and 18 males). Hydrocephalus etiologies were posthemorrhagic hydrocephalus (n = 9), postinfectious hydrocephalus (n = 5), aqueductal stenosis (n = 10), myelomeningocele (n = 2), and unknown cause (n = 5).


RESULTS
The mean modified Rankin Scale score was 1.6 (range 0-4). Hydrocephalic patients achieved lower scores for the SF-36 items physical functioning (70.5 vs. 93.5, p < 0.05), physical role functioning (74.2 vs. 88.3, p < 0.05), and general health perceptions (64.5 vs. 72.3, p < 0.05). Emotional, social role functioning, and mental health items did not differ between the groups. Assessment of vitality and pain resulted in a trend to worse values. Whereas the Physical Component Summary score was lower (46.1 vs. 54.3, p < 0.05), the Mental Component Summary score was not significantly different (50.2 vs. 48.7, p = 0.3). There was neither a statistically significant difference between subgroups of different etiologies nor an association with the number of subsequent hydrocephalus-related surgeries.


CONCLUSIONS
Adult HRQOL for patients with congenital hydrocephalus appears to be similar to that for healthy con with regard to mental health and social functioning aspects. Physical impairment is a predominant factor of compro quality of life.
Department of Neurosurgery.
Anja
A
Kutscher
Department of Neurosurgery.
Ulf
U
Nestler
Division of Neuropediatrics.
Matthias K
MK
Bernhard
Division of Neuropediatrics.
Andreas
A
Merkenschlager
Department of Neonatology.
Ulrich
U
Thome
Department of Children's and Adolescent Health, and.
Wieland
W
Kiess
Division of Neuroradiology, University Hospital Leipzig, Germany.
Stefan
S
Schob
Department of Neurosurgery.
Juergen
J
Meixensberger
Department of Neurosurgery.
Matthias
M
Preuss
D000328:Adult; D004522:Educational Status; D005260:Female; D006304:Health Status; D006801:Humans; D006849:Hydrocephalus / Q000209:etiology / Q000503:physiopathology / Q000523:psychology / Q000601:surgery; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D057566:Self Report
GMFCS = Gross Motor Function Classification System; HRQOL = health-related QOL; IVH = intraventricular hemorrhage; MCS = Mental Component Summary; MMSE = Mini-Mental State Examination; PCS = Physical Component Summary; QOL = quality of life; SF-36 = 36-Item Short-Form Health Survey; hydrocephalus; long-term outcome; mRS = modified Rankin Scale; quality of life; shunt therapy