2024 American Academy of Neurology Abstract Website

Objective:

To profile the clinical features associated with spontaneous intracranial hypotension (SIH) and better characterize how SIH impacts quality-of-life (QOL).

Background:

SIH, a condition associated with severe orthostatic headache impairing mobility, adversely affects patient QoL, including employment, finances, and marriage. Other areas of impact, such as transportation, education, and relationship with children have yet to be explored.

Design/Methods:

With input from SIH patients, their relatives and caregivers, and medical providers, we constructed a novel survey instrument for SIH. We then distributed the "SIH Impact Inventory" to adult patients with confirmed (n=62) and clinically suspected (n=36) SIH evaluated from 2016 to 2022. Participants completed the survey online using REDCap V 11.2.2.

Results:

98 of 234 participants (42%) meeting the inclusion criteria completed the questionnaires. Mean age was 50.6 years (SD 15.7), predominantly female (69.4%), White (90.8%) and married (69.4%). Median time to SIH diagnosis was 2.0 years (IQR: 0.5-4.8), and 75.5% were initially misdiagnosed. 96 of 98 patients received blood patches, of which 44.7% of the cohort experienced symptom relief for one month, and 21.0% had their SIH completely resolved. Of those currently employed, 95.2% (60/63) agreed that SIH affected their ability to work, and 65.1% (41/63) ultimately had to stop working. All 18 students in our cohort agreed SIH impacted their ability to attend school or complete coursework. 35.7% believed SIH frequently affected their driving ability, and 84.7% had difficulty riding in a car. SIH had a financial impact on 65.3% of our cohort, specifically medical expenses (98.4%) and travel for healthcare (65.6%). 45.9% agreed or strongly agreed that SIH affected their marriage or ability to find a romantic partner. For those with children, 68.8% (48/70) reported impact on their parenting ability.

Conclusions:

Patients with SIH experience impaired QoL across multiple domains. Faster, accurate diagnosis of SIH and better treatment will ultimately improve patient QoL.