Clinical course and patient-reported outcomes in conservatively managed spinal cavernous malformations

Abstract Background Studies on patients with spinal cavernous malformations (SCM) who were managed conservatively are scarce. We aimed to assess clinical, functional, and patient-reported outcomes in these patients. Methods This single-center cohort study included consecutive adult patients with SCM, diagnosed in 1995–2024, who underwent conservative management as the primary treatment strategy and had ≥ 6 months of follow-up. We retrospectively analyzed events of symptomatic hemorrhage (SH) and/or focal neurological deficits (FND) and conducted cross-sectional telephone and questionnaire follow-up. We evaluated functional outcome on the modified Rankin Scale (mRS) and quality of life using EuroQol 5-dimensions 5-levels (EQ-5D-5L) and Patient-Reported Outcome Measurement Information System 29 (PROMIS-29). Results We identified 30 patients with SCM, of whom 28 were included (median age 47 years IQR 36–61, 32% women). Nine (32%) initially presented with SH, 10 (36%) with FND, and 9 (32%) incidentally. During a median follow-up of 6.4 years (IQR 4.0–10.6), 10 (36%) patients experienced SH/FND and 5 (18%) underwent surgical intervention. The annual rate of SH/FND was 5.1% (95% CI 2.5–9.4%). At final follow-up, 26 (93%) patients completed the questionnaire and 16 (57%) were functionally independent (mRS ≤ 2). Patients had lower utility-weighted EQ index scores than the general population (0.63 versus 0.87, p < 0.001) and reported more PROMIS-29 anxiety/fear (56.8 versus 50.3, p = 0.002), depression/sadness (55.9 versus 50.3, p = 0.023), and fatigue (55.2 versus 49.4, p = 0.029). Conclusions Among 28 conservatively managed patients with SCM, 23 (82%) did not require surgical treatment during follow-up and the majority remained functionally independent. However, patients do report worse health than the general population, particularly mental health.