The psychological burden of NMOSD – a mixed method study of patients and caregivers
Journal: PLOS One; March 29, 2024
Author(s): Darcy C Esiason, Nicole Ciesinski, Chelsi N Nurse, Wendy Erler, Tom Hattrich, Ankita Deshpande, C Virginia O'Hayer
The emotional burden of NMOSD on patients and caregivers
Neuromyelitis optica spectrum disorder (NMOSD) is an autoimmune disease where inflammation of the central nervous system can cause very sudden drastic symptoms like vision loss, eye pain, paralysis, and loss of normal bladder/bowel function.
Because it is rare, unpredictable, and often disabling, NMOSD places a heavy psychological strain on both patients and their caregivers. This study aimed to understand that emotional impact in detail.
The study involved 31 adults with NMOSD and 22 caregivers from the US and Canada. The researchers used a series of survey questionnaires (standard psychological assessments), group discussions, and interviews to evaluate the study participants on anxiety, depression, coping style, trauma, how well they were able to adjust to the circumstances, and whether they were able to live according to their values.
Patients commonly reported anxiety, depression, difficulty adjusting (called “cognitive fusion”), resorting to coping strategies like avoiding emotions, and struggling to live according to their personal values. Caregiver patterns closely mirrored those of the patients they cared for, but the emotional challenges were more for patients than for caregivers.
Themes that emerged in the group discussions and interviews included
- Lack of trust in medical professionals
- Lack of support immediately after diagnosis
- Strained personal relationships
- Difficulty in living according to personal values and preferred choices
- Need to suppress feelings and avoid confronting stress
This study highlights the need for dedicated support and interventions that address the psychological impact of NMOSD.
Free Access: Full text
