Improving Care in Pediatric Neuro-oncology Patients:Needs of Children with Brain Tumors

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Pediatric Brain Tumor:

Brain tumors represent the most common solid tumors in childhood, accounting for almost 25% of all childhood cancer, second only to leukemia. Childhood CNS tumors encompass a wide variety of diagnoses, from benign to malignant. Any brain tumor can be associated with significant morbidity, even when low grade, and mortality from childhood CNS tumors is disproportionately high compared to other childhood malignancies. Management of children with CNS tumors requires knowledge of the unique aspects of care associated with this particular patient population, beyond general oncology care. Pediatric brain tumor patients have unique needs during treatment, as cancer survivors, and at end of life. A multidisciplinary team approach, including advanced practice nurses with a specialty in neuro-oncology, allows for better supportive care. Knowledge of the unique aspects of care for children with brain tumors, and the appropriate interventions required, allows for improved quality of life.

Throughout the spectrum of care these patients may have a combination of neurologic deficits including speech and swallowing impairments affecting communication and nutrition, vision changes, motor and sensory deficits, and impairments in balance and coordination. Headaches, fatigue, seizures, stroke, endocrinopathies, and neurocognitive and behavioral changes can develop at diagnosis, after surgery, after treatment, or at end of life. These deficits can improve and even resolve, but for the majority of patients they are chronic or evolving issues that impair function and require referrals to specialists in rehabilitative medicine, neuro-ophthalmology, neurology, endocrinology, psychiatry, and neuropsychiatry. With appropriate interventions and management pediatric patients with CNS tumors can have improved quality of life during treatment, survivorship, and at end of life.

Clinical Presentation

The diagnosis of a CNS neoplasm starts with a detailed history elicited by the practitioner. Practitioners must be sensitive to the parents’ anxiety as the questions are asked, particularly if the child has been unwell for a few weeks or months. A meticulous physical and neurological examination is performed. In general, a child who presents with rapidly progressing symptoms in a short time period is likely to have a rapidly growing malignant brain tumor, often associated with surrounding edema. The size and the location of the tumor contribute to the presenting symptomatology. Symptoms occur because of acute or chronic increased intracranial pressure and/or the infiltration or compression of surrounding areas of the central nervous system. Non-localizing symptoms that occur because of intracranial pressure can include headache, vomiting, changes in personality, diplopia from cranial nerve six (abducens) palsy, and papilledema and, in young children, rapidly increasing head circumference. Headaches that are new or have changed in nature from previous headaches, wake the child from sleep, occur upon awakening and worsen with the Valsalva maneuver are considered red flags.2 Headaches accompanied by nausea or vomiting, particularly if vomiting relieves the pain, are particularly concerning. Localizing symptoms occur because of the tumor’s location although there can be some overlap of symptoms. As an example, tumors in the cerebral hemispheres can cause headache, personality changes, memory loss, seizures, focal, motor or sensory deficits, hearing and visual field changes. Midline and suprasellar tumors can present with endocrinopathies, visual impairment and increased intracranial pressure. Cerebellar lesions causing hydrocephalus can also present with signs and symptoms of raised intracranial pressure but may also result in ataxia, cranial neuropathies, hemiparesis and dysdiadochokinesis.

Treatment:

Pediatric brain tumors encompass a wide range of pathologic classification. It is imperative to understand the pathology of the tumor because it directly impacts the child’s extent of disease evaluation, treatment and prognosis. The WHO classification system for pediatric central nervous system neoplasms is used to specify the histology and grade of tumors. With our increased understanding of the molecular signatures of many CNS tumors, the WHO classification will be updated in the future to include this information, which may be helpful in predicting prognosis, and possibly suggest new, targeted therapies. Staging of tumors is based upon location and by dissemination within and beyond the central nervous system.1 This information guides the team as they begin to care for the newly diagnosed child or adolescent and their family. Helping families and, in an age appropriate approach, the child or adolescent, understand the significance of the pathology is an important first step in their treatment.