Pediatric hydrocephalus is described as excess cerebrospinal fluid in the lateral ventricles. This is due to a bug in the mechanism of reabsorption of said liquid which involves an exaggerated head circumference, headaches, dizziness, irritability and other disabling symptoms that require immediate surgical intervention.
In countries with high or medium income, such as those in Europe, this diagnosis and its sequelae have a low impactsince it is solved with a simple surgical intervention in which a valve or shunt is activated to the patient to drain this excess fluid.
In these more affluent geographic areas, the most common causes are postnatal cerebral hemorrhage and comorbidity with other neurodevelopmental disorders such as spina bifida. In both cases, there is a standardized intervention protocol that offers stability to the child patient. Also, the incidence is low and the mortality rate from this disorder is almost inexistent.
The problem has tripled in Africa
Nothing to do with the outlook in low-income countries in Africa (Uganda, Tanzania, and Sudan stand out). There, the data on this disorder are much more alarming, even reaching the 200,000 cases of live births per year.
To be more specific, only one of the hospitals in Uganda, a country with more than 30 million people under the age of 15, treated 500 cases of hydrocephalus and 300 cases of spina bifida per year in 2009. Now this figure has triplicate.
The moment of diagnosis of hydrocephalus and the perception of quality of life have been related to delays in the onset of speech, social and behavioral problems.
In these areas the main causes of hydrocephalus (congenital or acquired) are lack of prenatal care (nutrition and folic acid intake and ultrasound monitoring of the mother during pregnancy) and postnatal brain infections due to the lack of standardized postoperative care protocols in these areas. Consequently, most cases present a high potential for seriousness, including a high mortality rate before two years of age.
Significant neuropsychological deficits
Despite the paucity of experimental studies with patients residing in low-income countries, some have concluded that the neuropsychological deficits associated with this disorder are remarkable. Most of the data shows a general index of developmental deficits compared to the control group. In addition, it is related to other variables associated with the disorder, such as a decrease in brain volume.
Memory, attention or executive function have not been studied up to now due to several factors: heterogeneity of the methodology, lack of resources for neuropsychological evaluation, preference for other indicators more related to neurology and neurosurgery, in addition to the fact that the severity of the cases makes this type of evaluation difficult.
In contrast, the neuropsychological profile associated with pediatric hydrocephalus in patients residing in middle- and high-income countries has been further studied. The results are not conclusive, since it is about a heterogeneous profile with deficits in memory, attention and the motor sphere. In most cases, patients maintain communication and language functions.
It is not enough to survive: studying the quality of life is important
Likewise, most of these studies include quality of life parameters as part of the neuropsychological evaluation. Up to what point Does the disease interfere with daily life?? In this case, some studies have shown that during childhood the diagnosis of pediatric hydrocephalus interferes with the perception of the quality of life of patients and especially of their guardians.
Specifically, the fathers and mothers of patients with this diagnosis report that their quality of life in the school context is low due to hydrocephalus. The moment of diagnosis of hydrocephalus and the perception of quality of life have also been related to delays in the onset of speech, social and behavioral problems, mental retardation and other cognitive problems. However, when it is the patients themselves who report this variable, consider themselves to have similar levels to their peer group.
If they survive, the quality of life of these patients has an extra value. Above all because if it is satisfactory it can make a difference in terms of their postoperative recovery, in addition to promoting cognitive improvement and a greater inclusion of this type of patient in society.
In studies located in low-income countries such as those in Africa, it is not common to assess the quality of life of these patients. Rather, they focus on exploring the neurosurgical evolution of the disorder, including at most an assessment of cognitive development with scales that are rarely used in Europe such as the Bayley Scale of Development-III. The difference is understandable if we take into account that the age of the African patient with pediatric hydrocephalus is younger than that of the European patient. In addition to the fact that the severity of hydrocephalus in these countries places neurosurgical intervention as top priority for pediatric patient survival.
The paradox is that, if they survive, the quality of life of these patients has an extra value. Above all because if it is satisfactory it can make a difference in terms of their postoperative recovery, in addition to promoting cognitive improvement and a greater inclusion of this type of patient in society. In short, a functional adaptation of the patient with hydrocephalus to his environment.
For this reason, several pioneering research groups have launched research lines specifically aimed at exploring the neuropsychological profile of the patient with pediatric hydrocephalus residing in these low-income areas, among them that of Neuropsychology and Acquired Brain Injury of the International University of Valencia and the working group linked to the VIU-NED Chair of Global Neuroscience and Social Change.
Research in the field of neuropsychology and health psychology will make it possible to achieve that much-needed improvement in the patient’s quality of life.
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