Acceptance and Commitment Therapy with Neuromyelitis Optica Spectrum Disorder Patient and Caregiver Pilot Study

Neuromyelitis optica spectrum disorder (NMOSD), also known as Devic disease, is an inflammatory disorder of the central nervous system. The primary symptom of NMOSD is attacks of inflammation and damage in the optic nerves and spinal cord. Such attacks may cause rapid onset of eye pain or blindness, limb weakness, numbness, or partial paralysis, shooting pain or tingling in the neck, back or abdomen, loss of bowel and bladder control, and prolonged nausea, vomiting or hiccups. These attacks may have periods of remission and relapse, with relapses most commonly occurring years to months apart. Monophasic NMO is a less common variant of NMOSD, and is characterized by a single, severe attack that may last days or weeks. When a patient is first diagnosed with NMOSD, it is unclear whether or not they will have relapses. The psychological burden of NMOSD is documented in the empirical literature, with a focus on experience of depression, pain, sexual dysfunction, sleep issues, stigma, and impact on partners.

Between 30% and 50% of individuals with NMOSD have been found to endorse clinically significant depressive symptoms on the Beck Depression Inventory. Compared with patients with Multiple Sclerosis (MS), NMOSD patients are twice as likely to receive a formal diagnosis of Recurrent Major Depressive Disorder.

Pain, bowel and bladder dysfunction, visual impairment, reduced sexual function, and inability to work, were found to most negatively impact emotional well-being and quality of life among people with NMOSD. It is estimated that chronic pain affects over 80% of NMOSD patients, including patients without recent relapse still commonly reporting moderate or severe pain. Pain severity is the strongest negative predictor of quality of life, and the most common symptom of concern voiced by patients to their physician.

Sexual dysfunction, specifically reduced libido, decreased orgasm and erectile dysfunction have been reported by 75% of males and 75% of females living with NMOSD.

Sleep disturbance is common in NMOSD, with 64% of NMOSD patients identified as poor sleepers, with correlations with anxiety, depression, pain, disability, and disease duration. Similarly, 71.4% of NMOSD patients endorsed fatigue, with correlations with sleep disturbance, depression, pain, and quality of life.