Abstract Details

Title The SIH Impact Inventory: A Pilot Study on Quality-of-life in Spontaneous Intracranial Hypotension

Topic Headache

Presentation(s) P3 - Poster Session 3 (5:30 PM-6:30 PM)

Poster/Presentation
Number 12-005

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.

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

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.

Authors/Disclosures
Victor Liaw (UTSW) PRESENTER	Mr. Liaw has nothing to disclose.
Morgan McCreary	No disclosure on file
Deborah I. Friedman, MD, MPH, FAAN	Dr. Friedman has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Eli Lilly. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Lundbeck. Dr. Friedman has received personal compensation in the range of $0-$499 for serving as a Consultant for Satsuma. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Linpharma. Dr. Friedman has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Pfizer. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Axsome. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Lundbeck. Dr. Friedman has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Impel. Dr. Friedman has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Abbvie. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Neurology Reviews. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MedLink Neurology . The institution of Dr. Friedman has received research support from Spinal CSF Leak Foundation. Dr. Friedman has a non-compensated relationship as a Program Co-Chair, Scottsdale Headache Symposium with American Headache Society that is relevant to AAN interests or activities. Dr. Friedman has a non-compensated relationship as a Medical Advisor with Spinal CSF Leak Foundation that is relevant to AAN interests or activities. Dr. Friedman has a non-compensated relationship as a Treasurer, Board of Directors with Southern Headache Society that is relevant to AAN interests or activities.