A group of doctors led by Dr. Anusha Yeshokumar has assessed the long-term impact of anti-NMDA receptor encephalitis (anti-NMDARE) on psychosocial outcomes, or emotional and social well-being.
Adolescents and adults with self-reported anti-NMDARE were invited to complete an online survey distributed by the Autoimmune Encephalitis Alliance and the Encephalitis Society in 2018.
The survey was completed by 397 members, and for this paper, 61 surveys were analyzed as they reported to have anti-NMDAR antibodies found in their blood or CSF. The Patient-Reported Outcomes Measurement Information System (PROMIS) Psychosocial Impact Illness form was administered to assess the negative impact of anti-NMDARE on participant’s emotional and social well-being.
- 59% were initially misdiagnosed,
- 3% misdiagnosed with psychiatric illness (bipolar disorder, schizophrenia)
- 3% misdiagnosed with a neurologic illness (stroke, epilepsy)
- 6% misdiagnosed with an infectious illness (flu, the common cold)
- 7% received only first-line treatment (classified as intravenous high-dose steroids, intravenous immunoglobulin, and/or plasmapheresis). – 41.0% received both first- and second-line treatments (classified as rituximab and/or cyclophosphamide).
- 4% of all participants saw at least one physician as an outpatient. While most of these patients saw a neurologist (95.1%), only a smaller proportion followed-up with a psychiatrist (37.7%).
- At the time of study participation (mean duration of 4.4 years since symptom onset), 56 participants (91.8%) reported persistent symptoms, including fatigue (n = 45, 73.8%), memory problems (n = 44, 72.1%), attention and concentration problems (n = 36, 59.0%), emotional or impulse control issues (n = 34, 55.7%), sleep problems (n = 29, 47.5%), headaches (n = 28, 45.9%), and seizures (n = 8, 13.1%).
- Overall, the participants scored significantly worse on emotional and social well-being than the comparison population of individuals with other chronic illnesses.
The researchers found that a return to work or school after the illness was negatively impacted by an initial misdiagnosis, and positively impacted by follow-up with a psychiatrist after hospitalization. They concluded that individuals with anti-NMDARE often have poor psychosocial outcomes despite literature reporting good outcomes in terms of neurologic disability.
These findings highlight the importance of improving current methods of determining outcomes after anti-NMDARE, including patient perspectives in assessing outcomes. It also supports the incorporation of assessments that specifically evaluate these psychosocial outcomes. These findings emphasize the critical role psychiatrists may play in both diagnosis and recovery and supports the importance of increasing awareness of this disease in psychiatry, which may help prevent delays in correct diagnosis. Lastly, these findings highlight the vital role that psychiatrists may play in improving patient care and outcomes.
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