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The Patient Experience of Recovery Following Anti-NMDA Receptor Encephalitis: A Qualitative Content Analysis
Gemma McKeon1, Stephen Parker1, Nicola Warren1
1Metro South Addiction and Mental Health Services, Brisbane, Australia (McKeon, Parker, Warren);University of Queensland Centre for Clinical Research, Herston, Australia (McKeon, Scott); Child and Youth Mental Health Group, Queensland Centre for Mental Health Research, Wacol, Australia (McKeon, Scott); School of Medicine, University of Queensland, Herston, Australia (Parker, Warren); and Child and Youth Mental Health Group, Queensland Institute of Medical Research Berghofer Medical Research Institute, Herston, Australia (McKeon, Scott).
Objective:
The authors examined patients' perceptions of the factors affecting their recovery from anti-N-methyl-d-aspartate receptor (anti-NMDAR) encephalitis, which is a rare, severe immune-mediated neurological disorder.
Methods:
Seven patients completed semistructured interviews exploring their experience of recovery. Participants were interviewed between 7 and 41 months after the initiation of treatment. Interviews were transcribed and subjected to qualitative content analysis.
Results:
Facilitators of recovery included the presence of a support system and treatment-related factors. Barriers to recovery included perceived psychiatric stigma, insufficient illness education, and lifestyle disruptions to accommodate ongoing treatment. Adverse physical, psychological, and neurocognitive sequelae of anti-NMDAR encephalitis continued to affect participants' daily functioning. Most participants described strategies to manage neurocognitive deficits, fatigue, and anxiety.
Conclusions:
Anti-NMDAR encephalitis contributes to persistent burden on patients, their families, and health services after the resolution of acute symptoms. Physical, psychological, and cognitive changes contribute to long-term disease morbidity. To optimize recovery and reduce disability, further attention must be directed toward illness education, reducing stigma, and role disruption. Longer-term disability support may benefit those who do not fully recover.
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