“My care team consists of over 30 healthcare professionals and I can’t recall even one time where one of them asked me about my mental health” (60 y.o. female patient).
Alexion is partnered with Thomas Jefferson University to assess and address mental health among Neuromyelitis Optica Spectrum Disorder (NMOSD) patients. Phase 1 of the partnership was a research study titled The Psychological Burden of NMOSD, which has recently been published in PLOSOne after a successful abstract debut at ECTRIMS 2023. This study is the first effort by Alexion to generate evidence on the unique mental health challenges of rare disease patients.
The spark for this study came from an Alexion workshop where colleagues listened to lived patient experiences. In this workshop, Alexion heard directly from patients that their mental health journey living with NMOSD was a very important moment that matters – Key research objectives in Phase 1 included understanding and characterizing the psychological burden of NMOSD patients and caregivers, developing a disease-specific scale to measure this burden, assessing the appropriateness of various mental health interventions, developing self-serve tools that fit the user needs of NMOSD patients and caregivers, and planning for developing and testing NMOSD telehealth-based intervention for mental health.
Findings from this phase reveal that patients with NMOSD and caregivers are experiencing markedly heightened anxiety, depression, medical trauma, mistrust in the medical system, perceived abandonment at the time of diagnosis, avoidance-based coping, and a sense of not living according to their values. All these psychological barriers can negatively impact how patients experience living with the disease and treatment adherence.
More information: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0300777