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  • Quality of Life in Individuals Surgically Treated for Congenital Hydrocephalus During Infancy; Perspective of a Tertiary Care Hospital from a Developing Country

    Final Number:

    Saad Akhtar Khan MD; Muhammad Ehsan Bari

    Study Design:

    Subject Category:

    Meeting: Congress of Neurological Surgeons 2016 Annual Meeting

    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.

    References: 1. Kutscher A, Nestler U, Bernhard MK, Merkenschlager A, Thome U, Kiess W, Schob S, Meixensberger J, Preuss M. Adult long-term health-related quality of life of congenital hydrocephalus patients. J Neurosurg Pediatr. 2015;4:1-5. 2. Persson EK, Hagberg G, Uvebrant P. Hydrocephalus prevalence and outcome in a population-based cohort of children born in 1989-1998. Acta Paediatr. 2005;94:726–732 3. Lindquist B, Carlsson G, Persson EK, Uvebrant P. Learning disabilities in a population-based group of children with hydrocephalus. Acta Paediatr. 2005;94:878–883 4. Barbro Lindquist, Elisabeth Fernell, Eva-Karin Persson, and Paul Uvebrant. Quality of life in adults treated in infancy for hydrocephalus. Childs Nerv Syst. 2014;30(8):1413-1418. 5. Kulkarni AV, Rabin D, Drake JM. An instrument to measure the health status in children with hydrocephalus: the Hydrocephalus Outcome Questionnaire. J Neurosurg. 2004;101:134–140 6. Gupta N, Park J, Solomon C, Kranz DA, Wrensch M, Wu YW. Long-term outcomes in patients with treated childhood hydrocephalus. J Neurosurg. 2007;106:334–339. 7. Perveen F, Tyyab S. Frequency and pattern of distribution of Congenital anomalies in the newborn and associated maternal risk factors. J Coll Physicians Surg Pak. 2007;17(6):340-3. 8. Rehman A, Fatima S, Soomro N. Frequency of congenital anomalies and associated maternal risk factors in the lower socio-economic group. Pak J Surg. 2006;22(3):169-73. 9. Rashid QTA, Salat MS, Enam K, Kazim SF, Godil SS, Enam SA, Iqbal SP, Azam SI. Time trends and age-related etiologies of pediatric hydrocephalus: results of a groupwise analysis in a clinical cohort. Child’s Nervous System. 2012;2:221-227.

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