- •Pediatric-onset NMOSD is a highly disabling disease associated with reduced quality of life.
- •Low quality of life was associated with higher EDSS and poor academic performance.
- •Emotional functioning was the most affected area in the quality of life inventory.
Neuromyelitis optica spectrum disorders (NMOSD) is a severe condition associated with high disability and low quality of life (QoL) in adults. Since this evaluation had been rarely perfomed in children, this study aimed to describe QoL in pediatric-onset NMOSD with positive aquaporin4 antibody (AQP4-IgG) patients.
This was a cross-section evaluation of patients and parents’ proxy QoL from individuals enrolled in a longitudinal cohort of AQP4-IgG positive NMOSD with onset ≤ 18 years of age.
Eighteen patients were included, sixteen girls. The mean (SD) age at disease onset was 11.5 (3.6) years. Eleven of patients experienced disability during a mean (SD) of 8.3 (5.3) years of follow-up. NMOSD had impact in QoL in 10 patients, being associated with higher EDSS and poor academic performance at last follow-up. Results from the PedsQL inventory for 13 patients and 10 parents disclosed low QoL specially in emotional functioning.
This study indicates impaired quality of life, high disability and high impact of the disease in daily life of adolescents and young adults with pediatric onset NMOSD.
To read this article in full you will need to make a payment
Purchase one-time access:Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
One-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:Subscribe to Multiple Sclerosis and Related Disorders
Already a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
- Pain, depression, and quality of life in neuromyelitis optica spectrum disorder.Neurol. Neuroimmunol. Neuroinflamm. 2021; 8: e985https://doi.org/10.1212/NXI.0000000000000985
- Neuromyelitis optica spectrum disorder. patient experience and quality of life.Neurol. Neuroimmunol. Neuroinflamm. 2019; 6
- Clinical features of neuromyelitis optica in children - US Network of pediatric MS centers report.Neurology. 2016; 86: 245-252
- Long-term follow-up of neuromyelitis optica with a pediatric onset.Neurology. 2010; 75: 1084-1088
- Risk factors for academic difficulties in children with myelin oligodendrocyte glycoprotein antibody-associated acute demyelinating syndromes.Dev. Med. Child Neurol. 2020; 62: 1075-1081
- Psychosocial impact of paediatric demyelinating disorders: a scoping review.Dev. Med. Child Neurol. 2020; 62: 1250-1258
- Patient perspectives on neuromyelitis optica spectrum disorders: data from the PatientsLikeMe online community.Mult. Scler. Relat. Disord. 2017; 17: 116-122
- Psychiatric comorbidities and suicidality among patients with neuromyelitis optica spectrum disorders in Argentina.Mult. Scler. Relat. Disord. 2018; 19: 40-43
- Fatigue, depression, and quality of life in children with multiple sclerosis: a comparative study with other demyelinating diseases.Dev. Med. Child Neurol. 2020; 62: 241-244
- Pediatric neuromyelitis optica spectrum disorders.Curr. Treat. Options Neurol. 2018; 20: 19
K.B. Holroyd, G.S. Manzano, M. Levy, 2020. Update on neuromyelitis optica spectrum disorder. Current Opinion in Ophthalmology Publish Ahead of Print.
- Pain in neuromyelitis optica and its effect on quality of life. a cross-sectional study.Neurology. 2011; 77: 652-658
- Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS).Neurology. 1983; 33: 1444-1452
- Assessment of patients with neuromyelitis optica spectrum disorder using the EQ-5D.Int. J. MS Care. 2019; 21: 129-134
- Resilience and depression/anxiety symptoms in multiple sclerosis and neuromyelitis optica spectrum disorder.Multiple Sclerosis and Related Disorders. 2018; 25: 309-315
- Outcome prediction models in AQP4-IgG positive neuromyelitis optica spectrum disorders.Brain. 2019; 142: 1310-1323
- Treatment and outcome of aquaporin-4 antibody–positive NMOSD.Neurol. Neuroimmunol. Neuroinflamm. 2020; 7
- Distinction between MOG antibody positive and AQP4 antibody positive NMO spectrum disorders.Neurology. 2014; 82: 474-481
- Severe structural and functional visual system damage leads to profound loss of vision-related quality of life in patients with neuromyelitis optica spectrum disorders.Mult. Scler. Relat. Disord. 2017; 11: 45-50
- Health-related quality of life in pediatric patients with demyelinating diseases: relevance of disability, relapsing presentation, and fatigue.J. Pediatr. Psychol. 2018; 43: 133-142
- Factors that impact health-related quality of life in neuromyelitis optica spectrum disorder: anxiety, disability, fatigue and depression.J. Neuroimmunol. 2016; 293: 54-58
- Tools used for evaluation of Brazilian children's quality of life.Rev. Paul. Pediatr. 2014; 32: 272-278
- Long-term neurocognitive outcome and quality of life in pediatric acute disseminated encephalomyelitis.Pediatr. Neurol. 2014; 50: 363-367
- Pediatric NMOSD: a review and position statement on approach to work-up and diagnosis.Front. Pediatr. 2020; 8: 339
- PedsQLTM 4.0: reliability and validity of the pediatric quality of life inventoryTM version 4.0 generic core scales in healthy and patient populations.Med. Care. 2001; 39: 800-812
- International consensus diagnostic criteria for neuromyelitis optica spectrum disorders.Neurology. 2015; 89: 177-189
- Sexual dysfunction in patients with neuromyelitis optica spectrum disorder.J. Neuroimmunol. 2020; 338577093
Published online: September 09, 2021
Accepted: September 2, 2021
Received in revised form: August 3, 2021
Received: March 20, 2021
© 2021 Elsevier B.V. All rights reserved.