The disease course can be relapsing (reported for 44− 83% of patients) or monophasic, the latter subtype being more common in MOGAD than in other neurological demyelinating disorders, such as neuromyelitis optica spectrum disorder (NMOSD) or multiple sclerosis (MS). The prevalence of MOGAD is estimated to be 1–4 cases per 100,000 people, and the disease is equally likely to affect males and females. Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, inflammatory, demyelinating condition of the central nervous system (CNS), caused by pathogenic serum antibodies that target MOG expressed on the surface of the myelin sheath. This survey provides important insights into the patient and caregiver perspectives of the challenges associated with the diagnosis of MOGAD to help facilitate improvement of the diagnostic pathway. This survey revealed that many patients faced a protracted and multi-step pathway towards MOGAD diagnosis, although it is likely that some of these patients sought diagnoses before MOG antibody testing was available. We conducted an online survey of people living with MOGAD and their caregivers to explore the challenges faced in the pathway to final MOGAD diagnosis. Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is increasingly recognised as a disease distinct from other inflammatory central nervous system demyelinating diseases, including multiple sclerosis and aquaporin-4 antibody-positive neuromyelitis optica spectrum disorder.ĭespite antibody testing, MOGAD diagnosis can remain challenging due to its heterogeneous disease course and low awareness of MOGAD among healthcare professionals. This survey provides unique insights from people living with MOGAD and their caregivers that could help address the challenges faced in the pathway to final MOGAD diagnosis. Diagnostic delay was associated with long-term negative consequences for physical health.
Most respondents (60.6%) reported receiving insufficient information/resources at the time of MOGAD diagnosis. More than half of patients (55.4%) received an alternative primary diagnosis before final MOGAD diagnosis. Although 60.6% of patients received a MOGAD diagnosis within 6 months of experiencing initial health problems, 17.7% experienced a ≥ 5-year delay. Patients saw a median of four doctors before diagnosis, with 26.5% of patients seeing at least six doctors.
Patients most frequently presented to emergency care physicians (38.7%) and primary care doctors (26.0%), with the MOGAD diagnosis most often made by general neurologists (40.4%) or neuro-immunologists (30.0%). Symptoms that prompted patients to seek medical care included blurred vision/loss of vision (58.2%), eye pain (35.8%) and difficulty walking (25.4%). Age of symptom onset ranged from 1 to 66 (median 28) years.
In total, 204 people living with MOGAD or their caregivers from 21 countries completed the survey most respondents were from North America. People living with MOGAD could share the survey with their caregivers. MethodsĪ 23-question online survey (including multiple-choice and free-text responses) covering symptom history, healthcare interactions and impact of diagnosis was emailed to people living with MOGAD by The MOG Project patient advocacy group. We conducted a survey to explore the patient experience from the start of symptoms to final MOGAD diagnosis. Despite increased recognition of MOGAD as a distinct disease and the availability of sensitive methods of MOG antibody testing, diagnostic challenges remain. Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare demyelinating disorder of the central nervous system.
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