What is the recommended surveillance and management plan for an adult with cerebral palsy?

Surveillance of Adults with Cerebral Palsy

Adults with cerebral palsy require systematic neurologic surveillance and multidisciplinary monitoring to detect new neurologic conditions, prevent secondary complications, and address the premature functional decline that commonly occurs with aging. 1

Neurologic Surveillance Requirements

Establish ongoing neurologic care with regular assessments to distinguish new neurologic conditions from baseline motor impairments. Adults with CP face increased risk for stroke, myelopathy, and other acquired neurologic disorders that can be mistaken for their underlying condition. 1

Specific Neurologic Monitoring:

• Screen for new-onset neurologic symptoms including changes in motor function beyond expected baseline, new sensory deficits, or altered consciousness patterns that may indicate stroke or spinal cord compression. 1
• Assess for cognitive changes systematically using the CPCog-Adult protocol at least once in young adulthood and again in the mid-fifties, evaluating verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. 2
• Monitor for epilepsy progression or new seizure activity using standard antiepileptic management protocols, as epilepsy affects 35% of individuals with CP and may evolve in adulthood. 3

Musculoskeletal and Pain Surveillance

Implement comprehensive pain assessment at every visit, as three in four adults with CP experience chronic pain. 3 This requires pharmacological therapy for ongoing pain and environmental interventions. 4

Orthopedic Monitoring:

• Continue hip surveillance with anteroposterior pelvic radiographs every 6-12 months to detect progressive hip displacement, which affects 28% of individuals with CP and can worsen in adulthood. 3, 5
• Screen for premature sarcopenia and contracture progression through regular functional assessments, as muscle wasting accelerates functional decline and increases cardiometabolic risk. 6, 7
• Monitor for scoliosis progression, particularly in bilateral CP, as spinal deformities can worsen with age and impact respiratory function. 3

Cardiometabolic and Chronic Disease Surveillance

Screen aggressively for cardiometabolic disease, as adults with CP have higher mortality from ischemic heart disease, cerebrovascular disease, and cancer compared to the general population. 8

Specific Assessments:

• Evaluate for premature obesity and sedentary lifestyle consequences, as the confluence of early muscle wasting and obesity mediates secondary comorbidity and increases coronary heart disease risk. 6
• Monitor blood pressure, serum glucose, and lipid panels regularly, as adults with CP are at heightened risk for cardiometabolic disorders due to habitual sedentary behavior and premature sarcopenia. 6
• Assess for osteopenia and fracture risk, as bone health deteriorates prematurely in adults with CP. 8

Functional and Quality of Life Monitoring

Assess motor function decline, chronic fatigue, and pain systematically, as these commonly experienced symptoms may reflect neurologic factors requiring intervention. 1, 7

Key Assessments:

• Document baseline functional status and monitor for premature decline in mobility, using validated assessment tools to track changes that may indicate treatable secondary conditions. 7
• Screen for chronic fatigue and pain patterns that may respond to spasticity management, sleep interventions, or other targeted therapies. 7
• Evaluate participation in educational and vocational activities, as cognitive impairments may become more pronounced as life demands increase. 2

Sleep and Behavioral Health

Conduct specialist sleep assessments and treat disorders before secondary complications emerge, using sleep hygiene, spasticity management, melatonin (2.5-10 mg), and gabapentin (5 mg/kg). 3, 5

Screen for behavioral disorders and mental health conditions, as 26% of individuals with CP have behavioral disorders that persist into adulthood. 3

Gastrointestinal and Nutrition Surveillance

Monitor weight regularly and assess swallowing safety if pneumonia history exists, as pneumonia remains the leading cause of death in adults with CP and severe physical disability elevates malnutrition risk. 4, 3

Evaluate for functional gastrointestinal abnormalities including bowel obstruction, vomiting, and constipation, which are common complications. 8

Sensory Monitoring

Provide ongoing vision and hearing assessments with standard accommodations as needed, as sensory impairments impact quality of life and participation. 3, 5

Critical Pitfalls to Avoid

Never attribute all new symptoms to the underlying CP diagnosis—adults with CP develop new neurologic conditions at higher rates than the general population, requiring vigilant surveillance to distinguish acquired pathology from baseline impairment. 1

Do not neglect cardiometabolic screening—mortality from ischemic heart disease and cerebrovascular disease is significantly elevated in this population, yet no national surveillance programs currently monitor chronic health in adults with CP. 8, 6

Avoid discontinuity in care during transition from pediatric to adult services—lack of systematic follow-up protocols for adults creates gaps in surveillance that allow preventable complications to progress. 2