Assessing the effects of spontaneous intracranial hypotension on quality of life, work ability and disability

Abstract

Background: Spontaneous intracranial hypotension (SIH), characterized by headaches due to cerebrospinal fluid leaks or low pressure, is a challenging condition to diagnose and treat and affects the quality of life.

Methods: An 8‑week online survey was conducted to assess the impact of SIH on symptoms, sociodemographics and quality of life. The cohort was comprised of patients who had a self-reported diagnosis of SIH and were divided into two groups: those with radiological evidence of SIH and those with clinical suspicion but no radiological evidence. Mental health and disability were evaluated using the Depression, Anxiety and Stress Scale-21 (DASS-21) and the Henry Ford Hospital Headache Disability Inventory (HDI).

Results: A total of 86 participants were included in the study, 59 with radiological evidence and 27 without. Most participants were female (84.9%) with a mean age of 44.8 years. Orthostatic headache was more common in participants without radiological evidence (74.1% vs. 42.4%). The severity in those with radiological evidence was 27.1% mild, 27.1% moderate, 30.5% severe and 15.3% extremely severe, while those without had 7.4% mild, 18.5% moderate, 63.0% severe and 11.1% extremely severe headaches. Mental health assessment using the DASS-21 scale showed that 77.9% of all participants reported signs of depression, 96.5% reported anxiety and 89.5% reported stress. The HDI showed 2.3% total disability, 40.7% severe, 19.8% moderate and 37.2% mild. The impact on employment was significant: 15.1% were able to work full-time, 48.8% part-time, 30.2% were unable to work and 5.8% retired early due to SIH.

Conclusion: The study demonstrates the broad impact of SIH affecting physical health, mental well-being, and socioeconomic status, and calls for multifaceted and robust management approaches to address its complex effects on patients.

Keywords: CSF leak; Headache; Mental well-being; Spontaneous intracranial hypotension; Therapy.

Fig. 1

Consultation of physicians. Note: This figure shows the frequency of consultations with different healthcare providers, including general practitioners, neurologists, anaesthetists and others. The bars show the percentage of participants and the number of consultations: “never”, “1-2”, “3-4” or “5+”

Fig. 2

Headaches preceding the onset of SIH and other medical conditions. Note: This figure shows the history of headache and other medical conditions before the onset of spontaneous intracranial hypotension (SIH). It includes the prevalence, type and frequency of headaches and other conditions such as postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome