Patient-Reported Barriers to Care in Spinal Cerebrospinal Fluid Leak: A Cross-Sectional Survey

Spinal cerebrospinal fluid (CSF) leak is a disabling condition associated with prolonged diagnostic delays and fragmented care pathways. We sought to characterize patient-reported barriers to spinal CSF leak care and to identify factors associated with adverse financial, employment, and emotional outcomes.

We performed a cross-sectional, anonymous online survey of adults with confirmed or suspected spinal CSF leak. Survey domains included diagnostic timelines, clinician encounters, referral pathways, structural barriers, and socioeconomic and emotional outcomes. Primary analyses were performed in respondents who completed all survey sections. Multivariable logistic and ordinal regression models identified predictors of financial worsening, employment disruption, and emotional wellbeing.

Among 691 responses, 93.8% reported clinician-confirmed diagnosis and 60.9% remained symptomatic. Timelines were prolonged; 31.1% reported spinal CSF leak suspicion within 3 months, while 17.4% of respondents reported delays of over 4 years. Misdiagnosis occurred in 78%, and respondents saw a median of 6.5 clinicians. Financial worsening occurred in 74.2% and employment disruption in 67.6%. Multivariable analysis showed positive imaging was protective against financial worsening (aOR 0.55 [95% CI 0.35-0.87], p = .01), while each additional clinician increased odds of financial worsening (aOR 1.05 [95% CI 1.02-1.08], p = .003) and of employment disruption (aOR 1.03 [95% CI 1.01-1.06], p = .01). Post-lumbar puncture leak carried >2-fold higher odds of employment disruption (aOR 2.34 [95% CI 1.23-4.45], p = .01). CSF-venous fistula had the longest timelines, with 21.9% waiting >4 years for a first procedure. Delays of >4 years independently increased odds of financial worsening (OR 1.80 [95% CI 1.05-3.08], p= .03). Wait-related access barriers (63.6%) were independently associated with self-harm ideation. Poorly managed emotional states were reported by 42.0%; caregiver support (OR 0.41 [95% CI 0.26-0.65], p < .001) and physician acknowledgment (OR 0.78 [95% CI 0.66-0.91], p = .002) were independently associated with improved emotional outcomes.

Patients with spinal CSF leak experience substantial diagnostic delay and fragmented care, with measurable downstream financial, occupational, and emotional consequences. Diagnostic burden and access barriers, rather than disease characteristics alone, are key drivers of adverse outcomes, while objective imaging confirmation and supportive clinical and caregiver interactions appear protective.