Introduction: Congenital Hydrocephalus is the most common neurological defect in Pakistan. Most children are treated surgically. However, it involves long-term follow-ups and associated with numerous possible complications.
The rationale, to assess the Quality of life in adults, treated for Pediatric Hydrocephalus.
Methods: This was a cross-sectional study conducted at the tertiary hospital from 1995 to 2005.
A standard Hydrocephalus Outcome Questionnaire (HOQ) was used. Continuous data is presented as Means and Standard Deviation. Student T-test was used to compare means. p-value of < 0.05 was taken as significant.
Results: 45 patients, undergone insertion of VP shunt. Their mean age at presentation was 6.2 ± 10.0 months. Mothers of the surviving 31 patients filled the HOQ after mean follow-up. The mean HOQ Physical health score was 0.47 ± 0.40, mean Social-emotional health score was 0.45 ± 0.40, mean Cognitive health score was 0.48 ± 0.43 and the mean Overall health score was 0.46 ± 0.40.The most common complication was shunt blockage (33%) and shunt infection (24.4%). Eighteen patients (40%) were re-operated.Delayed milestones were reported in 22 (48.9%) children and had a statistically significant relation with physical health outcome (p-value = 0.036). Number of re-operations were significantly related to social, cognitive and overall health outcomes (p-value = 0.003, < 0.001 and 0.016 respectively. Out of 14 patients who died, 7 (50%) had shunt infections (p-value = 0.020). Similarly, delayed milestones were also related to mortality.
Conclusions: Congenital Hydrocephalus and its management in the developing countries pose a big social burden on the families. These children have a poor quality of life and dependency when compared to similar children in developed countries. This requires measures such as parental education, arranging long-term follow-up and multidisciplinary approach with involvement of neuro-rehabilitation specialist and pediatric psychologist to achieve better social outcomes in their life.
Patient Care: This study identifies low quality of life in patients treated surgically for Congenital Hydrocephalus in developing countries when compared to developed countries. Therefore, it requires measures to improve parental education, arranging long term follow-up and multidisciplinary approach with involvement of neuro-rehabilitation specialist and pediatric psychologist to achieve better social outcomes in their life.
Learning Objectives: 1) It identifies the social and physical health-related quality of life outcome in children treated surgery for Pediatric Hydrocephalus.
2) It identifies factors associated with increased mortality.
3) It highlights the social burden of this disease in the developing country.
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