We are thrilled to announce the publication of Spinal CSF Leak Foundation medical advisor Dr. Deborah Friedman’s study, “Quality of Life in Patients with Confirmed and Suspected Spinal CSF Leaks”—funded by your research donations.
The paper, which was just published in the journal Neurology, concluded:
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.
With almost half of the respondents scoring in the moderate depression range or worse, a quarter reporting moderate anxiety or worse, and well-being scores being “significantly inferior” to those of the general population, it’s clear that spinal CSF leak has a profound effect on quality of life. Indeed, the study showed that 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.
Another important finding from this study is that participants whose spinal CSF leaks were unconfirmed experienced just as much of an impact on quality of life than those whose leaks were able to be confirmed on imaging.
Being able to quantify the impact of spinal CSF leak on patients, whether a leak is suspected or confirmed, is so helpful, not only for affirming what we experience, but in underlining the importance for physicians of taking seriously the need for prompt diagnosis and treatment—and for taking seriously the patients who come to them in need.
Thank you to everyone who helped to support this study. Due to your efforts, we now have crucial, quantitative, important published data on just how severely spinal CSF leak impacts the lives of those affected by it.
Further reading:
2023 Intracranial Hypotension Conference: Dr. Deborah Friedman