Objective: Describe the demographic profile of adults with Cerebral Palsy (CP) in South Africa (SA).

Quantify the burden of spasticity in adults with CP.

Investigate current spasticity management.

Identify barriers to effective management.

Background: Cerebral Palsy is a lifelong neurological condition causing movement dysfunction, often complicated by spasticity. Spasticity contributes to pain, mobility impairments, and reduced quality of life. While research has focused on children, adult CP care remains under-explored, especially in low- and middle-income countries like SA. Limited epidemiological data on spasticity prevalence and management impedes healthcare planning and access to treatment.

Method: A cross-sectional, quantitative study surveyed South African adults (>18 years) with CP via a REDCap questionnaire. Data collected included demographics (age, gender, CP subtype), spasticity severity (prevalence, intensity, complications, functional impact), current management (medical, therapeutic), and barriers to care. Analysis included descriptive statistics, chi-square tests, ANOVA, and logistic regression models.

Results: A total of 599 responses received which met the entry criteria, of which 52% were male. The mean age +_SD was 34.4±14.5 years. 90% of the respondents reported symptoms associated with spasticity. Complications related to spasticity reported, included pain (87%, average intensity: 5.6/10, SD=2.7), mobility (87%), contractures (55%) and falls (54%). Additionally caregiver burden was increased with 52% of respondents needing a caregiver. Of the respondents 88% indicated receiving regular therapy during childhood, however in adulthood only 27% regularly follow up with a doctor, and 21% receive some form of regular rehabilitative therapy. Barriers to access included lack of education on management (40.6%), financial constraints (51%), and transportation difficulties (72.1%).

Conclusion: This is the largest survey to date, of adults with CP in SA. We demonstrate firstly that CP is often complicated by spasticity and this complication remains prevalent into adulthood. Secondly, there is a significant burden placed on adults with CP as a consequence of spasticity, including caregiver burden, pain, and impaired activity. Lastly, as compared to children, adults with CP engage significantly less with the medical and therapeutic fraternity. There is an opportunity to assist these patients in managing their spasticity.

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