Affected health domains in patients with brainstem cavernous malformations
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Brainstem cavernous malformations (CM) carry high risks of hemorrhage and neurologic morbidity. While much is published on physical effects of brainstem CM, very little is known about these patients’ quality of life. This study aimed to assess the quality of life PROMIS-29 health domains of brainstem CM patients and identify quality of life predictors.
This was a cross-sectional study of adult patients with at least one brainstem CM identified by advertising on the Angioma Alliance website and from our institutional CM registry. A web-based questionnaire was administered and included self-reported information about the patient, cavernous malformation, residual clinical symptoms, and treatment. In addition, patients filled out the PROMIS-29 (version 1.0). The PROMIS-29 has 7 health domains and is standardized against the general population. We defined impaired quality of life as at least one out of 7 abnormal domains and used a 1 standard deviation cutoff for abnormal. We verified clinical and radiographic data to self-reported data in 28.8% of patients.
A total of 104 patients (mean age of 46.5 ± 11.5 years; 77.9% females) were recruited. Most (82.7%) reported at least one symptomatic hemorrhagic event and 36.5% reported at least 1 surgical procedure. At least one abnormal PROMIS domain was present in 64.4% of patients with fatigue (34.6%), anxiety (35.6%), social (28.2%), and physical (27.9%) domains being the most common. Among patients with a Rankin Score of 0–2, 55% had at least one abnormal domain. Gait difficulty, but not age, sex, or surgery predicted impaired quality of life.
More than half of patients with brainstem CM have impaired quality of life. Fatigue, anxiety, and social function, in addition to physical dysfunction, are common; practitioners should be aware of these concerns. PROMIS-29 provides additional information than modified Rankin Score and should be considered in clinical trials and when assessing treatment outcomes until a disease-specific outcome tool is available.
KeywordsCavernous malformation Cavernous angioma Quality of life PROMIS-29
The authors would like to thank the Angioma Alliance and Connie Lee, PsyD, for allowing our study to advertise on their website. We would like to thank and acknowledge the patients that participated for sharing their stories and personal details of their journey.
The National Center for Advancing Translational Sciences (NCATS) Grant Number UL1 TR002377 provided support in the form of funding for statistical services used in preparation of this manuscript. NCATS had no role in the design or conduct of this research.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the Mayo Clinic Institutional Review Board and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
Statement on the welfare of animals
This article does not contain any studies with animals performed by any of the authors.
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