Study Explores Quality of Life of Children with Hydrocephalus and Caregivers

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By Jessica Moser

Hydrocephalus can have a significant impact on the life and psychological wellbeing of a child. Most surveys about the overall Quality of Life (QoL) of a child with hydrocephalus only ask the caregiver for information about the child. Kathrin Zimmerman, a 2020 Hydrocephalus Association Travel Award recipient, is lead author on a study recently published in the Journal of Neurosurgery: Pediatrics, which assessed QoL by surveying both children with hydrocephalus and their caregivers. The study is also the first to look at the association between QoL and psychological comorbidities of children with hydrocephalus.

What They Did

Patients 5-21 years old and their caregivers  were recruited during their normal pediatric neurosurgery clinic appointments. Ninety-one caregivers and 39 children with hydrocephalus were enrolled in this study. QoL of the children was measured by caregivers using the Hydrocephalus Outcome Questionnaire (HOQ) and by children using a self-report version, the children’s HOQ (cHOQ). Both surveys assessed overall child QoL as well as three subsections: social-emotional health, cognitive health, and physical health. To assess the psychological wellbeing of the patients, a variety of additional surveys were given to both children and caregivers to determine symptoms of post traumatic stress syndrome (PTSS), depression, anxiety, and other disorders.

What They Found

Hydrocephalus Outcome Questionnaire

Using the HOQ and cHOQ, participants answered the survey and were given scores between 0 and 1. A higher score indicated a higher QoL. Parents gave a mean overall score of 0.68 while children gave a mean overall score of 0.77. One main finding of the study was that children rated themselves as having higher QoL than their caregivers did. This difference was statistically significant in the ratings for physical health, indicating that children may have a different perception of their physical health than their parents do. This finding has important implications for research about QoL and possible interventions; when possible, special attention should be given to a child’s self-report in such studies.

Some variables that the study found to be related to caregiver assessed child QoL included child age, type of hydrocephalus, and history of endoscopic third ventriculostomy (ETV). Older ages were associated with higher physical QoL, as assessed by caregivers. Hydrocephalus caused by aqueductal stenosis had higher overall and physical QoL scores than other types of hydrocephalus. Children who have an ETV without a ventriculoperitoneal (VP) shunt also had a higher overall QoL than those with a VP shunt, as assessed by caregivers.

Children with more surgeries tended to self-report lower overall and cognitive QoL on the cHOQ. There wasn’t a significant correlation between child self-reported QoL and any of the other measured variables such as age, etiology, or parent education.

Psychological Questionnaires

When assessing psychological wellbeing, children reporting higher levels of PTSS, depression, fatigue, and anxiety generally reported lower overall QoL. Similarly, caregivers who reported more severe PTSS in their children and a higher perceived burden of care tended to also report a lower overall QoL. However, an analysis of their findings indicates that the relationship between psychological comorbidities and QoL is highly dependent on who is making the report.


It is important to consider both caregiver and patient perspectives in QoL assessments. As this study has shown, there were significant differences in how children assessed their own QoL as opposed to their caregivers. Overall, patients who reported having more surgeries and higher levels of psychological comorbidities described themselves as having a worse QoL than their peers.

View the original report.


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