Potential of Neuropalliative Care Evaluated for Patients With Drug-Resistant Epilepsy


Investigators suggest further studies to better determine is NPC had measurable benefits for patient quality of life.

Alison Hixon, MD, PhD, neurology specialist, neurology department, Barnes-Jewish Hospital

Alison Hixon, MD, PhD

Results from a recent needs evaluation of neuropalliative care (NPC) for patients with drug-resistant epilepsy found that while most patients were not aware of NPC, they had a positive response upon learning more about NPC goals. Data were presented at the 2021 American Epilepsy Society (AES) Annual Meeting, December 3-7 in Chicago and virtually, with investigators identifying different NPC services for this patient population to assist in coping with life with seizures. 

A total of 20 adults with drug-resistant epilepsy and a mean age of 39 years (range, 27-61; standard deviation [SD], 9.4) volunteered to complete a 2-hour interview about their identity, perceptions, experiences, and their needs in terms of living with drug-resistant epilepsy. Patients were read a description of NPC and asked if they thought it had potential to play a role in their care. Also completed were 2 quality of life (QOL) questionnaires, the Quality of Life in Epilepsy-10 (QOLIE-10), which is typically used epilepsy clinics, and the McGill Quality of Life (MQOL), which is generally used in NPC clinics. 

Although full analyses of the interviews and surveys are ongoing, investigators led by Alison Hixon, MD, PhD, neurology specialist, neurology department, Barnes-Jewish Hospital, found that identity and relationships were altered following epilepsy diagnosis for 5 interviewees. Four patients’ responses revealed difficulties with coping, indicating issues that could be addressed by NPC, namely a lack of planning for the future, a need for both social and spiritual support, and communication gaps with epilepsy providers. Only 2 participants could provide a description of NPC, both of which were focused on aging and dying. Four participants in total had heard of NPC, 3 participants expressed an interest in NPC, 1 was unsure about the benefit, and 1 was not interested. 

READ MORE: Ganaxolone Associated With Decreased Seizure Frequency in Patients With CDD, LGS

“It is estimated that up to 70% of individuals can control seizures with optimal medical management, yet seizure freedom is not a reality for millions of epilepsy sufferers, despite surgical options,” Hixon et al wrote. “These [people with drug-resistant epilepsy] must continue to live with seizures that have large effects on daily life, including disruption from seizing, injuries from falls, medication side effects, interference with education and jobs, and mental health issues. One possible way to better support [people with drug-resistant epilepsy] is to NPC, a branch of palliative medicine focused on improving QOL in many other chronic neurological diseases through symptom management, psychosocial and spiritual support, and future planning.” 

Despite their different time scales of 4 weeks versus 2 days, analyses of the QOLIE-10 and the MQOL for 19 patients (1 lost to follow-up) suggested a strong correlation between the 2 questionnaires (R2 = 0.68). Analyses are still ongoing, but a high rate of existential distress on the MQOL were reported by half of respondents when queried about life progress and self-worth. 

Patients had a mean epilepsy duration of 16 years (range, 3-42; SD, 11.1) and experienced comorbidities, including depression (n = 14; 70%), anxiety (n = 12; 60%), and memory problems (n = 18; 90%). Patients had tried a mean of 5.9 anti-seizure medications (range, 2-14; SD, 2.8).

NPC is not only being explored within the epilepsy field but has also become an area of focus for patients with Parkinson disease. Indu Subramanian, MD, director, VA Southwest Parkinson’s Disease Research, Education, and Clinical Centers, recently spoke with NeurologyLive® on the development of this focus in neurology, providing overview of some of the reasons why this approach is crucial to patient management and meeting their long list of unmet needs. Here more about what she had to say in the video below. 

For more coverage of AES 2021, click here.

Hixon A, Vaughan C, Baca C, et al. Neuropalliative care for person with drug resistant epilepsy – A needs assessment. Presented at AES2021; December 3-7, 2021; Chicago, IL and Virtual. Abstract 2.099
Related Videos
Video 2 - 4 KOLs are feature in, "Changes in Presentation of Spasticity Over Time"
Video 1 - 4 KOLs are feature in, "Definition and Pathophysiology of Spasticity"
Dolores D. Santamaria, MD
 Bruce Cree, MD, PhD, MAS, FAAN
Video 3 - 5 KOLs are featured in "Transitions of Care: Moving Spinal Muscular Atrophy Patients from Pediatric/Adolescent Care to Adult Clinics"
Video 3 - 5 KOLs are featured in "Presentation of Adult Spinal Muscular Atrophy in Clinics"
Fawad Khan, MD, FACNS
© 2024 MJH Life Sciences

All rights reserved.