Care and mobility considerations
Primary tumours
Needs may arise from either the:
- Effect of the tumour
- Effects of treatment
Needs are likely to arise because of neurological impairments caused or exacerbated by either the tumour or its treatment. Most primary tumours will be treated with surgery or surgery followed by radiotherapy in older children or surgery followed by chemotherapy and then by radiotherapy some years later in children under 3. When radiotherapy cannot be delayed in the under 3s the side effects of the treatment may be significant and enduring. The primary tumour may be completely or partially removed. Most children will have had a craniotomy – the recovery from this type of surgery is described under treatment. In an uncomplicated case, where there was no or minimal neurological impairment before surgery, recovery would be expected to take up to 3 months.
If a neurological impairment is present on diagnosis, the impairment may get temporarily worse because of the treatment. Recovery may take much longer than 3 months. Some improvement in impairment is likely with recovery and will be aided by neurorehabilitation (medical processes to aid recovery from nervous system injury and to compensate for functional alterations).
Care
Care needs may arise due to physical or behavioural neurological impairments.
Physical problems may include problems with limb or trunk movement ranging from clumsiness/unsteady balance to paralysis. There may be paralysis or loss of sensation on one side of the body (hemiplegia), similar to a person who has had a stroke. If the upper limbs are affected, help may be required with activities of daily living. Severe problems with balance and weakness are likely to make aspects of self care, particularly dressing, difficult. Preparing or carrying hot food or drinks with balance problems is potentially dangerous. Sudden onset of visual impairment, in addition to the other symptoms of a brain tumour are, likely to create or exacerbate care needs. Fits are a common symptom and supervision may be required until fits can be controlled with appropriate medical treatment.
Behavioural problems may include reduced or absent sense of danger as well as inappropriate or distressing behaviour. Patients often lack motivation and planning strategies for daily activities. Short term memory loss is a frequent feature of brain tumours and their treatment. When behavioural problems are present regular supervision will be necessary. Symptoms may get worse during treatment but may improve afterwards over several months. Improvement may continue gradually over several years but usually plateaus after maximal rehabilitation.
Mobility
Mobility may be affected in several ways by neurological impairments:
- Hemiplegia - loss of movement / clumsiness to either side of the body.
- Altered sensation to either side of the body.
- Perceptual neglect of one side of the body.
- Difficulties with balance.
- Poor concentration.
- Central sensory deficits such as blindness or visual field defects and hearing problems.
- Behavioural problems.
Children with weakness, sensory problems and balance problems may have difficulty walking. They may require assistance or assistive devices and/or equipment to enable safe mobility and independence. Severe problems with balance may also make walking difficult or dangerous even though they have normal strength and movement in their legs. Children with sensory problems may require guidance and supervision if their deficit is severe.
Children with behavioural or cognitive problems may require guidance and supervision because of one of the following:
- Loss of awareness of danger.
- Memory loss.
- Inappropriate behaviour.
Children with difficult to control or uncontrolled epilepsy may require guidance and supervision in both the home and unfamiliar places. 30% of people with brain tumours do not achieve complete control of their epilepsy.
Symptoms may get worse during treatment and can improve afterwards over several months. Improvement may continue gradually over several years but not always completely resolve, particularly memory loss, which can actually continuously worsen following completion of primary treatment.
Recurrent brain tumours
Brain tumours usually recur because they are either highly malignant or they were in an inaccessible area of the brain and could not be completely removed. Further treatment is likely to be able to control symptoms and slow further progression down; but impairments are less likely to improve. If needs are identified because of neurological or cognitive impairment in recurrent brain tumour, indefinite awards are recommended.
