Quality of Life in Patients With Confirmed and Suspected Spinal CSF Leaks

Abstract

Background and Objectives: Spontaneous intracranial hypotension (SIH) is a debilitating condition typically producing orthostatic headache limiting upright time. SIH is often difficult to diagnose and treat, negatively affecting quality-of-life (QoL) in patients with the disorder. We studied QOL in confirmed and suspected SIH patients using standardized instruments, including suicidality. Methods: We performed a cross-sectional survey of adult patients with confirmed and clinically suspected SIH evaluated in our Headache and Facial Pain Program from 2016 to 2022. Using an online data collection tool (REDCap V 11.2.2), participants completed validated questionnaires assessing general well-being (SF-36), depression (PHQ-9), general anxiety disorder-7 (GAD-7), spiritual well-being during chronic therapy (FACIT-Sp-12) and headache impact (HIT-6). Subsequently, we interviewed willing participants to administer the Columbia-Suicide Severity Rating Scale (C-SSRS) assessing suicidal behavior and ideation. Results: 234 patients met inclusion criteria and were invited to participate in the study and 95 (59 confirmed and 36 clinically suspected) completed the questionnaires. The cohort’s average age was 51.1 years (SD: 15.5), predominantly female (69.5%), White (91.6%), and married (69.5%). Three-quarters (74.5%) scored within the most severe headache category (HIT-6). SF-36 scores were significantly inferior (p < .0001) to the general population, and lower than reported values for patients with multiple sclerosis and idiopathic intracranial hypertension. Almost half (49.1%) of respondents scored in the moderate depression range or worse (>10) and 25.4% scored with moderate anxiety or worse (>10). FACIT-Sp-12 scores were significantly worse (p < 0.0001) in symptomatic participants than in the validation cohorts of AIDS and cancer patients. Of the 67 respondents who completed the C-SSRS, over half (64.2%) endorsed a wish to be dead, and 22.4% had demonstrated suicidal behavior. Symptom-free SIH patients (n = 22) scored significantly better than symptomatic patients, comparable to the general population. Conclusion: Based on our single-center cohort, SIH is associated with severe headache pain and high rates of depression, anxiety, and disability, affecting basic activities of daily living. Individuals with confirmed and suspected spinal CSF leaks scored similarly on these measures including suicidality. Outcomes were comparable to the general population following successful treatment or spontaneous remission. Improved identification and treatment of SIH are imperative to improve patients’ QoL.

Diagnosis and Treatment of Spontaneous Intracranial Hypotension

“…In patients whose SIH is treated effectively, quality-of-life scores improve to that comparable with the general population. 2 …”

“…SIH profoundly degrades health-related quality of life and severely affects ability to maintain partner relationships. 1 , 2 One report noted that SF-36 quality-of-life scores were lower than those reported for patients with multiple sclerosis, measures of spiritual well-being were worse than those reported among patients with cancer or AIDS, and nearly a quarter of patients with SIH symptoms described having wished they were dead. 2 This is a true crisis in the life of those afflicted.…”

“… 1 , 2 One report noted that SF-36 quality-of-life scores were lower than those reported for patients with multiple sclerosis, measures of spiritual well-being were worse than those reported among patients with cancer or AIDS, and nearly a quarter of patients with SIH symptoms described having wished they were dead. 2 This is a true crisis in the life of those afflicted. In addition, patients with chronic SIH are at risk of long-term complications including cerebral venous sinus thrombosis, superficial siderosis, and bibrachial amyotrophy.…”

Headache associated with intracranial hypotension: diagnostic challenges and difficulties in everyday neurological practice

“…The severity of headache varies from mild and non-bothersome to very severe, resembling a sub-arachnoid haemorrhage [3]. It may be extremely painful and debilitating [5]. www.journals.viamedica.pl/neurologia_neurochirurgia_polska Magdalena Boczarska-Jedynak, Daniel Stompel, Headache in intracranial hypotension period, a patient with such a headache is usually referred to a neurologist.…”

Spontaneous intracranial hypotension – a spinal disease

“…Studies also show that the symptoms of low CSF pressure can have a significant effect on quality of life. Depression, anxiety, and suicidal thoughts are common in this patient population [11,12]. An incorrect diagnosis can result in an incorrect therapeutic workup and even unnecessary surgical interventions [3].…”