1. The Patient Experience of Recovery Following Anti-NMDA Receptor Encephalitis: A Qualitative Content Analysis.
- Author
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McKeon G, Parker S, Warren N, and Scott JG
- Subjects
- Adult, Anxiety psychology, Fatigue psychology, Female, Humans, Male, Neuropsychological Tests, Qualitative Research, Rare Diseases, Social Support, Activities of Daily Living psychology, Anti-N-Methyl-D-Aspartate Receptor Encephalitis complications, Cognitive Dysfunction psychology, Social Stigma
- Abstract
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.
- Published
- 2021
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