gms | German Medical Science

Objective: To estimate health related quality of life (QOL) with the diagnosis of an untreated cerebral cavernous malformation (CCM) and to analyze possible influencing factors.

Methods: We performed a cross-sectional study based on our prospective uni-center CCM database (2017-2018), using standardized interviews (SF-36 questionnaire, HADS-D score, self-assessment questionnaire [visual analogue scale, VAS]). Including criteria was a new diagnosis of a so far untreated CCM and information about the diagnosis in a specialized CCM consultation. Results were matched with various clinical and MRI parameters and observed in longitudinal trend.

Results: We included a consecutive series of n=140 qualified patients. Mean age was 45.2±13.0 years (89 female, 51 male). In 74 patients a CCM was found without bleeding event. 66 patients presented with a first symptomatic hemorrhage (SH) and 16 suffered from a second bleeding. Cavernoma related epilepsy was found in 25 patients. In 52 patients the CCM was found coincidentally. Overall SF-36 results showed decreased component score (MCS) and sub-scores compared to age matched German control cohort (p<0.05). Surprisingly even asymptomatic patients were significantly impaired in MCS and social/emotional functions. Suffering from a bleeding aggravates body-related sum and sub-scores. A high percentage of patients showed increased levels of depression/anxiety (≥11, HADS-D) and negative self-assessment (VAS>5) reflecting fear of the CCM which are effectors of QOL in multivariate analysis. Further negative influencing factors on QOL are chronic diseases. Timely distance to the initial diagnosis/bleeding events improves values.

Conclusion: Patients with the diagnosis of a CCM are highly impaired compared to normal population. They show abnormal rates of depression/anxiety, however, self-assessment questionnaires reveal a strong correlation of QOL and impairment/fear caused by CCM. Further analysis is planned in our longitudinal study.