Abstract WP18: Association Of Quality Of Life Domains And Clinical Symptoms In Familial Cerebral Cavernous Malformation Patients

Background: Familial cerebral cavernous malformation (FCCM) is characterized by multiple brain lesions at risk for intracranial hemorrhage (ICH) and neurological morbidity, affecting quality of life (QoL). PROMIS-29 is a QoL survey validated in some neurological diseases but has not yet been evaluated for FCCM. We aimed to assess whether PROMIS-29 health domains are associated with clinical symptoms in FCCM patients. Methods: PROMIS-29 surveys assessing seven QoL domains were completed by 198 FCCM patients >=18 years either at a baseline or follow-up visit in the Brain Vascular Malformation Consortium CCM study. Raw PROMIS-29 domain scores were converted to T scores that are standardized to a reference population with mean 50 and SD 10, and oriented so that higher scores are unfavorable. One-sample t-tests and p-values assessed whether mean T-scores were significantly different from 50 (p<0.05). Multivariable linear regression was used to test whether domain scores were associated with history of ICH, seizures, or headaches at time of survey, adjusting for age and sex. Results: Compared to a reference population, FCCM patients had significantly higher anxiety (52.7, 95% CI: 51.3-54.2, p<0.001), pain (52.5, 95% CI: 51.0-54.0, p=0.002), and physical functioning scores (52.0, 95% CI: 51.4-54.5, p<0.001), but lower social participation scores (46.9, 95% CI: 45.4-48.5, p<0.001). History of ICH and headaches were significantly associated with 4 domains each (all >3 points, p<0.05, Table), while seizures were not associated. Fatigue was the only affected domain in common. Conclusion: FCCM patients differed significantly from the reference population on anxiety, pain, physical functioning, and social participation domains. These same domains were significantly associated with history of ICH or headaches in patients. Further studies will determine whether changes in health domains are associated with changes in clinical symptoms.