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.
Keywords: Chronic relapsing inflammatory optic neuropathy (CRION); Optic neuritis; Patient-reported outcome measure (PROM); Quality of life.
In this patient-physician perspective article, we share the story of a patient affected by an autoimmune disease that attacks the nerves connecting the eyes and the brain and reflect back physicians’ perspectives on the disease and the patient’s experience of it. In a compelling account, we gain some understanding of what it might be like to live with the fear of unpredictable episodes of sudden, recurrent sight loss and the important impacts that this has on a patient’s life and mental wellbeing. We recognize that the outcome metrics that physicians usually focus on, such as measurement of vision and imaging of the optic nerve, do not fully capture the outcomes that most matter to the patient. We explore patient-reported outcome measures that go some way towards bridging this gap. Finally, we consider the technological advances that will make more comprehensive capture of the patient experience a reality in future clinical practice and research, supporting both patients and physicians to optimize shared care.