Twenty-year outcome in young adults with childhood hydrocephalus: assessment of surgical outcome, work participation, and health-related quality of life

Abstract

Object Shunting of CSF is one of the most commonly performed operations in the pediatric neurosurgeon's repertoire. The 1st decade after initial shunt insertion has been addressed in several previous reports. The goals of the authors' study, therefore, were to determine 20-year outcomes in young adults with childhood hydrocephalus and to assess their health-related quality of life (HRQOL). Methods Patients younger than 15 years of age, in whom a first-time shunt insertion was performed for hydrocephalus in the calendar years 1985–1988, were included in a retrospective study on surgical morbidity, mortality rates, academic achievement, and/or work participation. Information concerning perceived health and functional status was assessed using the 36-Item Short Form Health Survey (SF-36) and Barthel Index, which were completed by patients still alive by September 1, 2009. Results Overall, 138 patients participated, no patient being lost to follow-up. For the 20-year period, the overall mortality rate was 21.7%. The mortality rate was not significantly higher in the 1st decade after initial shunt insertion than in the 2nd decade (p = 0.10). Ten percent of the patients surviving still live with their primary shunt in place, whereas 81% required at least one revision, and among these individual the mean number of revisions was 4.2 (median 3, range 0–26). There was a significantly higher revision rate during the 1st decade after initial shunt insertion compared with the 2nd decade (p = 0.027). The majority of patients live lives comparable with those of their peers. At follow-up, 56% were employed in open-market jobs or were still students, 23% had sheltered employment, and 21% were unemployed. The HRQOL was slightly lower in the hydrocephalic cohort than in the normative population. A significant difference was found in 2 of 8 SF-36 domains—Physical Functioning and General Health. Conclusions During the 20-year follow-up period, 81% of the patients required at least one revision of the CSF shunt. The mortality rate was high: 24 patients died in the 1st decade and 6 died in the 2nd decade after implantation of the initial shunt. In total, 4 deaths (2.9%) were due to shunt failure. Shunt placement to treat childhood hydrocephalus has a substantial effect on social functioning in later life, although perceived health was positively found to be better than expected in young adults with hydrocephalus.