Studies Assess Long-term Psychosocial Outcomes and Care Transitions for anti-NMDARE

Studies Assess Long-term Psychosocial Outcomes and Care Transitions for anti-NMDARE

  • Anti-NMDARE is an antibody-mediated encephalitis in which NMDA receptor dysfunction results in a myriad of symptoms, including seizures reported in about 75 percent of cases.

  • Despite overall “good” long-term outcomes, many individuals continue to have persistent neurobehavioral symptoms and cognitive deficits years after acute presentation.

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The two research projects were led by Mount Sinai’s Anusha K. Yeshokumar, MD. The studies were published July 2020 in Epilepsy & Behavior. In the “Assessment of long-term psychosocial outcomes in anti-NMDA receptor encephalitis” study, researchers revealed:

  • Patients with anti-NMDARE had worse psychosocial function scores than individuals with a broad range of chronic illnesses.

  • Initial misdiagnosis of anti-NMDARE was associated with decreased odds of return to work/school.

  • Follow-up with psychiatrists after hospitalization was associated with increased odds of return to work/school.

  • Younger age of symptom onset and presence of ongoing neuropsychiatric issues were predictive of worse psychosocial function scores.

The study involved 61 individuals age 15 and older who self-reported anti-NMDARE. The mean duration since symptom onset was 4.4 years at the time of participation, and 36 participants (59 percent) reported receiving an initial misdiagnosis.

  • Only 1 out of 3 study participants followed up with a psychiatrist.

“Our findings make a strong case for integrating psychiatrists in the treatment team and increasing collaboration among neurologists and mental health providers...”

- Anusha K. Yeshokumar, MD

“These findings raise questions as to whether biological or nonbiological factors are the cause of negative outcomes among some patients,” Dr. Yeshokumar says. “Furthermore, little is known about the specific role mental health treatment plays in anti-NMDARE outcomes. Because it is typically considered a neurologic disease, involvement of mental health providers is often limited beyond early treatment of psychiatric symptoms. Interestingly, only one-third of study participants reported they had followed up with a psychiatrist after hospital discharge. Our findings make a strong case for integrating psychiatrists in the treatment team and increasing collaboration among neurologists and mental health providers at all stages of care to improve patient outcomes.”

For the second study “Assessment of care transitions and caregiver burden in anti-NMDA receptor encephalitis,” 76 caregivers of individuals with anti-NMDARE were recruited through an online survey. Demographic and clinical information, as well as responses to the Care Transition Measure 15 (CTM-15) and Zarit Burden Interview (ZBI), were collected. Exploratory factor analysis (EFA) was conducted on the ZBI, and underlying constructs were analyzed for associations with the CTM-15 and clinical characteristics. Overall, research revealed that caregivers did not feel well-informed or confident to meet the needs of patients following transition from hospital.

  • Caregivers did not feel well-informed or confident.

The top CTM-15 items that caregivers disagreed or strongly disagreed with were:

  • “When the patient left the hospital, I had a readable and easily understood written plan that described how all of their health care needs were going to be met” (73 percent);

  • “When the patient left the hospital, I was confident that I knew how to manage their health” (62 percent); and

  • “When the patient left the hospital, I had all the information I needed to be able to take care of them” (58 percent).

Worse care transitions were strongly predictive of higher caregiver burden scores, says Dr. Yeshokumar.

“These findings make it clear that we need to do more to prepare patients and caregivers for the transition from the hospital to the home, such as provide them with an individualized and much more detailed plan for managing the disease or a brochure that tells them what to expect,” she says, adding, “we also need to better understand the burden that caregivers face.”

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Anusha K. Yeshokumar, MD

Anusha K. Yeshokumar, MD

Assistant Clinical Professor, Icahn School of Medicine at Mount Sinai