Objective:

 To characterize the substantial impact to HRQoL among patients with NMOSD.

Background:

 NMOSD is a chronic autoimmune condition defined by damage to the central nervous system which can present as transverse myelitis, optic neuritis, area postrema, and pain syndromes. Subsequent NMOSD attacks often lead to cumulative, persistent disability which impacts health-related quality of life (HRQoL).

Design/Methods:

An SLR was conducted following Cochrane guidelines to identify studies reporting HRQoL in NMOSD published before May 2023 in MEDLINE and Embase. Abstracts from relevant conferences published in the past three years were manually searched. 

Results:

62 original studies were included in the SLR; 87% were observational studies and 71% were from Asia. HRQoL among patients with NMOSD measured by EQ-5D(16 studies) and SF-36(32 studies) ranged widely from 0.41 to 0.82(scale 0-1) and 34.2 to 79.1(scale 0-100). 18 studies reported baselines for SF-36 physical-component-score(PCS), ranging from 27.1-42.5 and mental-component-score(MCS) ranging from 37.6-55.0. Several studies characterized the substantial impact to HRQoL among patients with NMOSD: 83-84% of patients reported pain, 71% were fatigued, 68% reported sleep disturbances, 64% experienced sexual dysfunction, and 45% to 52% had depression. The most frequently assessed patient-reported outcomes(PROs) in NMOSD were related to depression and anxiety, as measured by BDI(15 studies), followed by pain as measured by BPI(9 studies) and MPQ(7 studies). 70% of patients had a mean pain intensity of 4.3(scale 0-10) despite using pain medication. Patients with neuropathic pain were characterized by higher pain scores and had a significantly higher odds risk for depression as compared to patients with other types of pain. 

Conclusions:

Patients with NMOSD are characterized by substantial impact to HRQoL; pain, fatigue, sleep disturbances, sexual dysfunction, and depression considerably impacted patients. This review highlights the critical need for comprehensive management of NMOSD to effectively improve physical and mental wellbeing and enhance quality of life for patients with NMOSD.