The SIH Impact Inventory: A Pilot Study of a Novel Instrument Assessing Quality of Life in Spontaneous Intracranial...

Spontaneous intracranial hypotension (SIH) profoundly affects quality of life. We aimed to identify and quantify various aspects of patients' experiences with SIH.

We piloted an "SIH Impact Inventory," a cross-sectional survey developed in collaboration with patients, family members, and caregivers. Potential participants were identified from a single center using diagnosis and procedure codes. Participants completed the inventory online using REDCap between December 2021 and April 2022.

Ninety-eight adult patients completed the inventory. The mean age was 50.6 years, and 69.4% were female. Sixty-three percent had a confirmed diagnosis of SIH, and 36.7% had clinically suspected but unconfirmed SIH. The mean time to diagnosis was 2.0 (interquartile range: 0.5-4.8) years; 25.5% went undiagnosed for 5 or more years, and 75% were initially misdiagnosed. The 3 most common symptoms were head pain, neck pain, and "brain fog." Of those undergoing epidural blood patch procedures, 22% experienced relief of symptoms for a median time of 1.3 months; those with a confirmed diagnosis had more prolonged relief. 58.2% reported experiencing rebound intracranial hypertension after a therapeutic procedure. Surgical repair of the leak was most likely to result in a symptom-free status (p = 0.003) than nonsurgical treatments. Of those working for compensation when they developed SIH, 95.2% indicated that the condition affected their ability to work and 65.1% stopped working. The financial burden was substantial for 65.3% of our cohort, with medical expenses (98.4%) and travel for health care (65.6%) being the most prevalent expenses. SIH negatively affected personal and family relationships for most patients.

Individuals with confirmed and suspected SIH experience difficulties related to the disorder itself and the lengthy process of diagnosis and treatment. Our findings demonstrate the marked impact of SIH on employment, education, interpersonal relationships, and finances. Compared with previous studies, our cohort reported considerable cognitive difficulties, with rates approaching those of head pain. Heightened awareness of SIH, referral to a center with expertise in SIH, increasing the number and geographic distribution of SIH centers, and advances in diagnostic and treatment modalities can help alleviate some of the challenges that patients face.