Background/Purpose:
RCVS is a syndrome characterized by acute onset of severe headaches, with or without neurologic deficit with evidence of reversible cerebral vasoconstriction. Natural history and long term outcome of RCVS has not been thoroughly investigated. To date, three main series of RCVS have been reported and long term outcomes were not readily available.
Objectives: i) To assess long term neurologic outcome of patients with RCVS using validated outcome measures for stroke and headache ii) To determine the impact of RCVS on patient’s health related quality of life (QoL).
Methods:
After approval from the institutional review board, prospective cohort analysis of patients recruited from our RCVS database registry was conducted. Validated questionnaires were mailed to the patients on a one-time-basis. The forms included: Headache screening questionnaire, Headache Impact Test-6 (HIT-6), Barthel index (BI), Patient Health Questionnaire (PHQ-9) and European QoL Questionnaire (EQ-5D-5L).
Results:
A total of 57 patients were present in the RCVS registry. Of these patients, 3 refused to participate in the study, 26 were inaccessible or lost to follow-up, 11 agreed to participate but never returned the forms, and 17 returned the questionnaires (5 incomplete). Mean follow-up time from diagnosis to answering questionnaires was 112 months (range 10-254 months). Of the 17 patients, 8 (47%) continued to have headaches, but majority (88%) reported improvement in the character of headaches with only 1 patient having worsening. 3 (38%) patients reported that the headaches were similar to the initial headache during onset of RCVS. Headache impact on life as measured by the HIT-6 showed that only 2 patients (17%) had a severe impact (HIT score > 60), while 3 patients each (25%) reported substantial impact (56-59) or some impact (50-55); and 4 (33%) reported no impact (<50). The mean MIDAS score was 11.83 and only 2 (17%) had severe disabling headaches (MIDAS score > 21). 13(93%) patients were independent per BI scores > 85 (8 patients scored 100). EQ-5D-5L measurements showed that 9 (69%), 11 (85%) and 9(69%) patients had no problems with mobility, self-care and leisure respectively. However, 10 (77%) and 7(54%) patients had slight to severe problems with pain and anxiety respectively. Scoring per the PHQ-9 questionnaire revealed that only 1 (7%) patient had severe depression (PHQ score 20-27), while 7(50%), 3(21%), 1(7%) and 3(21%) patients had no/minimal (0-4), mild (5-9), moderate (10-14) and moderately severe (15-19) depression.
Conclusion:
This is the first study looking at the long term outcomes of patients with RCVS. Although limited by small numbers, preliminary data suggests that patients with RCVS have favorable outcomes both in terms of headaches and stroke. Although close to half (47%) of patients continued to have chronic headaches, most had improved in character with only 17% reporting severe headache by MIDAS and HIT-6 scoring. Majority of patients were also independent (93%) and had no problems with mobility or self-care, but pain and anxiety decreased the QoL. Severe and moderately-severe depression was present in 28% of patients. Additional studies are needed to determine if similar results are observed in other RCVS patients.
Disclosure:
S. John,
None;
L. H. Calabrese,
None;
S. Tepper,
Allergan, ATI, BristolMyerSquibb, DepoMed, GSK, MAP, Merck, NuPathe, and Zogenix,
2,
ATI,
1;
M. Stillman,
None;
K. Uchino,
None;
R. Hajj-Ali,
None.
« Back to 2012 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/long-term-outcomes-of-patients-with-reversible-cerebral-vasoconstriction-syndromes-rcvs/