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

## TL;DR

This study examines the long-term outcomes of patients with spinal cavernous malformations managed without surgery, finding that most remain functionally independent but report lower quality of life and mental health issues.

## Contribution

The study provides new insights into the clinical course and patient-reported outcomes of conservatively managed spinal cavernous malformations, highlighting mental health disparities.

## Key findings

- 36% of conservatively managed SCM patients experienced symptomatic hemorrhage or neurological deficits during follow-up.
- Most patients (82%) did not require surgery and remained functionally independent.
- Patients reported significantly worse mental health and quality of life compared to the general population.

## Abstract

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.

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).

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).

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.

The online version contains supplementary material available at 10.1007/s00415-026-13715-2.