Health‐related quality of life in patients with untreated cavernous malformations of the central nervous system

Abstract

Background and purposeTo estimate health‐related quality of life (HRQOL) in patients with untreated cavernous malformation of the CNS [cavernous cerebral malformations (CCMs)].MethodsWe performed a cross‐sectional observational study on patients with CCMs admitted to our department from 1 November 2017 to 10 January 2020 using standardized interviews [short‐form‐36 questionnaire, hospital anxiety and depression score (HADS‐A/D), CCM perception questionnaire]. Included criteria were diagnosis of an untreated CCM and information about the diagnosis in a specialized CCM consultation. Health‐related quality of life (HRQOL) data were analyzed and compared to the German normal population. Uni‐ and multivariate analyses were carried out to identify variables with impact on outcome.ResultsTwo hundred nineteen (93%) of 229 eligible patients were included. Mean age was 46.3 ± 14.7 (18–86) years; 136 (62%) were female. Ninety‐eight (45%) patients presented with symptomatic hemorrhage (SH), and 17 (8%) with repetitive SH. Ninety‐two (42%) patients were asymptomatic. Thirty‐seven patients (17%) suffered from cavernoma‐related epilepsy. Twenty‐eight patients (13%) suffered from familial CCMs. Patients showed significantly decreased component scores and subdomain scores compared to the normal population, with effects ranging from small to large. This accounted largely also for asymptomatic patients (except for physical component score and main physical subdomains). Multivariate regression analysis confirmed impact of functional impairment on physical component score. HADS‐A was significantly increased. HADS‐A/D strongly correlated with mental component score and individual perception of the CCM.ConclusionsPatients with the diagnosis of a CCM showed decreased HRQOL compared to the normal population even when not suffering functional impairment or neurological symptoms. Our data may function as benchmarks in evaluation of different (future) management strategies.

Quality of life and mood assessment in conservatively treated cavernous malformation‐related epilepsy

“…Recently, Herten et al (2021) tested quality of life in noninvasively treated patients and concluded that CCM strongly decreases HRQOL, even in the absence of functional impairment or neurological symptoms. Moreover, while numerous authors have described the negative impact of epileptic seizures on quality of life (Mahrer-Imhof et al, 2013;Villanueva et al, 2013), the impact of CRE in CCM patients has yet not been considered.…”

“…The trial was performed in accordance with Strengthening the Reporting of Observational Studies in Epidemiology protocol. Parts of the data were published previously in a study, investigating HRQOL in patients with untreated cavernous malformations of the central nervous system (Herten et al., 2021 ).…”

“…A prospective cross-sectional study was performed of all patients who were admitted to our specialized outpatient clinic for CCM disease between November 2017 and January 2020. (Herten et al, 2021).…”

“…While the vast majority of CCM studies focus on different treatment strategies and risk factors leading to hemorrhage (Al‐Shahi Salman et al., 2016), literature reporting on HRQOL is rare (Bicalho et al., 2017; Rinkel et al., 2019). Recently published data highlight the impact of CCM disease on self‐reported quality of life but HRQOL and mood have never been studied exclusively in medically treated CRE patients (Herten et al., 2021).…”

The occurrence of neuropathic pain following surgery of brainstem cavernous malformations

“…Whilst impairment of HRQOL in patients with BSCM (untreated [34] or after surgery [26]) is known, such a high proportion of patients suffering additionally from HRQOL‐decreasing NP has not been reported before. Considering the proximity of BSCM to several brainstem nuclei and pathways involved in pain processing [32], it seems likely that the low rates or lack of mention of postoperative NP in BSCM may be a form of underreporting.…”