Dr. Friedman’s Quality of Life Study: Update
In November 2021, we invited our community to help fund an important study quantifying how spinal CSF leak affects people’s quality of life. Today we are pleased to announce that medical advisor Dr. Deborah Friedman’s study, “Quality of Life in Patients with Confirmed and Suspected Spinal CSF Leaks,” has been accepted for publication by the journal Neurology.
Dr. Friedman and her team recently presented a poster with some of their findings. Overall, the study’s conclusion was: “SIH is associated with severe headache pain and high rates of depression, anxiety, and suicidality. Improved identification and treatment of SIH are imperative to improve patients’ quality of life.”
Dr. Friedman notes that, to her knowledge, this study is the first in headache medicine to include a measurement of spirituality in assessment of quality of life. Her team used a questionnaire called FACIT-Sp-12 (Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being Scale), which is designed to assess spiritual well-being in individuals. The questionnaire consists of 12 items that participants respond to based on their personal experiences and feelings. It measures different aspects of spirituality such as inner peace, comfort, having a sense of purpose in life, finding strength in faith or spiritual beliefs, and feeling hopeful about the future despite illness. In Dr. Friedman’s study, participants experiencing symptoms of spinal CSF leak scored much worse on this assessment compared to other groups—including people with cancer and AIDS. It’s a striking example of just how severely spinal CSF leak can affect a person’s well-being.
Another finding of note: 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.
A poster presentation on Dr. Friedman’s study, “Quality of Life in Patients with Confirmed and Suspected Spinal CSF Leaks”
Thank you to everyone who helped to this study. Thanks to your efforts, we have crucial crucial quantitative data on just how severely spontaneous intracranial hypotension due to spinal CSF leak impacts the lives of those affected by it.
Further information:
Spinal CSF Leak Foundation: Research we Fund