Abstract
This article, co-authored by a patient affected by bilateral, recurrent, atypical optic neuritis, and clinicians, discusses the mental burden of living with uncertainty and the possibility of further sight loss, along with the side effects of treatment. The patient shares some of the challenges, coping strategies, and the value they found in creating and participating in a patient support group. The physicians consider whether current clinical measures adequately capture the outcomes that matter to patients and discuss the role for patient-reported outcome measures (PROMs). We identify technological advances that are lowering traditional barriers to the use of PROMs in research and routine clinical care and look towards new PROM instruments enhancing shared patient-physician care in the future.