TY - JOUR
T1 - Affected health domains in patients with brainstem cavernous malformations
AU - Kumar, Shivram
AU - Lanzino, Giuseppe
AU - Flemming, Kelly D.
N1 - Funding Information:
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.
Publisher Copyright:
© 2019, Springer-Verlag GmbH Austria, part of Springer Nature.
PY - 2019/12/1
Y1 - 2019/12/1
N2 - Background: 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. Methods: 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. Results: 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. Conclusion: 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.
AB - Background: 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. Methods: 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. Results: 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. Conclusion: 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.
KW - Cavernous angioma
KW - Cavernous malformation
KW - PROMIS-29
KW - Quality of life
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U2 - 10.1007/s00701-019-04075-0
DO - 10.1007/s00701-019-04075-0
M3 - Article
C2 - 31641860
AN - SCOPUS:85074558318
SN - 0001-6268
VL - 161
SP - 2521
EP - 2526
JO - Acta Neurochirurgica
JF - Acta Neurochirurgica
IS - 12
ER -