Rehabilitation after a brain tumour: cognition, fatigue and everyday function

The NHS describes a brain tumour as a growth of cells in the brain, either non-cancerous or cancerous, with symptoms that depend on the area affected: headaches, seizures, nausea, memory problems, changes in personality, progressive weakness on one side, and vision or speech problems. Treatment can include steroids, other symptom medicines, surgery, radiotherapy and chemotherapy.

NICE guideline NG99 points out that care needs are a particular challenge because, in addition to physical disability, the tumour and treatment can affect behaviour, cognition and personality. Rehabilitation therefore runs in parallel with cancer treatment rather than starting only after it ends. Teams are asked to focus on optimising function even when prognosis is limited, because quality of life matters at every stage.

NICE advises considering referral for a neurological rehabilitation assessment at diagnosis and at each stage of follow-up, looking at physical, cognitive and emotional function, and giving people and carers information on how to access neurological rehabilitation in the community, as an outpatient or as an inpatient. The assessment is usually carried out by a neurorehabilitation team, with physiotherapy, occupational therapy, speech and language therapy and neuropsychology as needed.

The broader NICE guideline on neurological rehabilitation asks for a holistic needs assessment, agreed goals, a written plan and a single point of contact, and says rehabilitation should not be delayed while the assessment is completed.

Changes in cognitive functioning are among the complex needs that professionals are asked to address during and after treatment, along with fatigue, loss of personal identity, loss of independence, maintaining a sense of hope, changes in personal and sexual relationships, the difficulty of living with uncertainty and the impact of tumour-related epilepsy.

Cognitive rehabilitation uses the same tools as after other brain injuries: assessment of memory, attention and executive function, followed by compensatory strategies, diaries, routines and environmental changes. NICE suggests considering ongoing neuropsychology assessment for people at risk of cognitive decline after treatment. Psychological support helps with anxiety, low mood and adjustment, and families are included, because personality and behaviour changes affect relatives.

Weakness on one side, balance problems, speech or language difficulties and visual field loss may follow the tumour or surgery. Physiotherapists work on strength, mobility and balance. Occupational therapists look at dressing, cooking, work and equipment. Speech and language therapists address communication and swallowing. The principles are the same as for stroke rehabilitation, with the caveat that planning must take account of the tumour treatment schedule, tiredness after radiotherapy, steroid effects and seizure risk.

NICE guidance on neurological rehabilitation encourages therapy in whatever setting suits the person, including home and telehealth, and asks that exercise programmes take account of fatigue, pain and executive function and be supervised by a registered practitioner.

Fatigue is common after a brain tumour and its treatment and is named explicitly in the NICE list of complex needs. The neurological rehabilitation guideline recommends asking about fatigue at every assessment, checking for treatable factors such as mood problems, sleep disturbance, nutrition, endocrine function, medicines and vestibular or sensory symptoms, and offering a management approach that may include pacing and energy conservation, cognitive behavioural therapy and appropriate physical activity.

Because endocrine function can be affected by radiotherapy that reaches the pituitary gland, NICE suggests regular endocrine checks after the end of treatment for people who may be at risk, as hormone problems can feed into tiredness.

NICE says people with brain tumours can develop treatment side effects months or years later. The list includes cataracts, cavernoma, cognitive decline, epilepsy, hearing loss, hypopituitarism, infertility, neuropathy, radionecrosis, secondary tumours, stroke-like migraine attacks after radiotherapy and stroke. Teams are asked to assess individual risk when treatment finishes, record it in a written treatment summary and explain it.

• After cranial radiotherapy, a healthy lifestyle that includes exercise, a healthy diet and stopping smoking is encouraged to reduce the risk of stroke.

• For those at risk of stroke, blood pressure, HbA1c and cholesterol may be checked regularly.

• People who may have had a pituitary-affecting radiotherapy dose may have regular endocrine checks.

GOV.UK says you must tell the DVLA if you have a brain tumour and must also speak to your doctor, who might tell you to surrender your licence. Failure to report can result in a fine and prosecution if an accident occurs. NICE asks teams to explain this legal obligation at an early stage.

Work, benefits and social support are part of the rehabilitation plan. NICE recommends that employment be discussed early with the person and employer, and that vocational rehabilitation be offered where appropriate. Charities and the key worker can help families find peer support.