Caregivers’ perspectives on outcomes in anti-NMDAR encephalitis
Key Points:
- A multicentre study assessed the experiences of caregivers of N-methyl-D-aspartate receptor (NMDAR) encephalitis patients, with an emphasis on long-term psychological distress, social challenges, and difficulties navigating healthcare systems.
- The researchers, including Encephalitis International’s CEO Dr Ava Easton MBE, qualitatively evaluated a broad range of challenges, including the difficulties obtaining the proper diagnosis, the distress resulting from caring for someone with a neuropsychiatric disease, and the social isolation that often occurs due to the major responsibilities that accompany caregiving.
- The study underlined the need for a more holistic approach to treating neuroimmune diseases, such as NDMAR encephalitis, that incorporates the wellbeing of the caregivers into the clinical care plan.
By Annabel Wallace
Introduction
N-methyl-D-aspartate receptor (NMDAR) encephalitis is an autoimmune neurological disease in which patients’ antibodies attack the brain, often resulting in severe neuropsychiatric symptoms. The disease is relatively rare, with an incidence of approximately 1.5 cases per million people. The clinical presentation of this disease varies tremendously, consequently complicating early diagnosis. The severity of symptoms and hurdles in diagnosis take an extreme toll not only on the patient, but also on those in a caregiver position.
This study provided a much-needed investigation into how caregivers are affected by a loved one’s NMDAR encephalitis. The researchers included CEO of Encephalitis International Dr Ava Easton MBE as well as a member of Encephalitis International’s Scientific Advisory Panel, Prof. Carsten Finke. Through their multifaceted analysis, researchers provided insight into the challenges caregivers face and offered concrete solutions to reduce their burden.
Study Design
The SAPIENCE study evaluated the experiences of 28 caregivers from cohorts in 3 European sites: Berlin, Germany; Lyon, France; and Barcelona, Spain. Participants were required to be caregivers for individuals with a confirmed diagnosis of NMDAR encephalitis, be over the age of 18, and have fluency in one of the study site’s provided languages (German, French, Catalan, Spanish, or English).
Through interviews and focus groups, the researchers collected qualitative evidence of caregivers’ experiences. The researchers identified five recurring themes in participants’ narratives: 1) challenges during the diagnostic process, 2) emotional and psychological distress, 3) the effects of NMDAR encephalitis on social relationships, 4) challenges interacting with healthcare professionals, and 5) commonly utilised coping mechanisms. These five themes guided their analysis and discussion.
Principal Findings
- Challenges during the diagnostic process
Participants frequently cited the onset of disease before diagnosis as a particularly stressful time. Caregivers noted how psychiatric symptoms that appear at the start of the disease often hindered proper diagnosis, leading to significant distress due to a lack of certainty. Frequent misdiagnoses caused by the complex clinical presentation of the disease indicate the remaining need for increased awareness of NMDAR encephalitis among healthcare professionals.
- Emotional and psychological distress
The caregiver experience was primarily characterised by emotional and psychological distress. The role of the caregiver can be traumatic, as patients often experience seizures and exhibit dramatic psychological disturbances. More robust psychological care must be provided to caregivers to help them cope with witnessing the severe symptoms of NMDAR encephalitis in the acute stages of disease and later to recover from this likely trauma.
- The effects of NMDAR encephalitis on social relationships
Another common reflection among participants was how their role as caregivers strained their social relationships, including their family, personal, and work connections. Many participants noted financial strain resulting from the need to step back, partially or entirely, from their jobs to provide the hands-on care required during the post-acute recovery stage of disease. Narrative recounts of these challenges highlight the lack of social support infrastructure for caregivers.
- Challenges in interacting with healthcare professionals
Caregivers remarked that coordinating their loved one’s care with multiple healthcare providers caused significant distress, specifically noting frustration with poor communication between different care teams. Increased understanding of NMDAR encephalitis and more multidisciplinary treatment plans could help to improve the medical care patients receive and ease the burden on caregivers.
- Coping mechanisms
Although many challenges accompany the role of caregiver, participants also highlighted effective coping mechanisms that have enabled them to support loved ones with NMDAR encephalitis. A few such strategies mentioned in the study were involvement in patient advocacy groups, practicing mindfulness techniques, and joining caregiver support networks.
Conclusions
This multicentre study provided an initial investigation of the caregiver experience in NMDAR encephalitis, revealing the need for greater support for these individuals particularly to ensure their psychological and emotional wellbeing. Further studies are needed to gain insight into challenges caregivers in other regions may face and to evaluate the efficacy of caregiver support systems once they are put into place.