Development of a patient-centred conceptual framework of health-related quality of life in neuromyelitis optica: a qualitative study.

ABSTRACT:

Background

Neuromyelitis optica (NMO) is an auto-immune disease that can cause severe visual and mobility impairments. Research on health-related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs.

Aim

This study provides the first qualitative exploration of HRQoL in NMO, conducted to provide a conceptual framework for the development of an NMO patient-reported outcome measure.

Method

Fifteen people with NMO (aged 18-74; 11 women, 4 men) participated in semi-structured interviews; data were analysed using constant comparative analysis.

Results

HRQoL in NMO is a multifaceted concept incorporating highly subjective perceptions of normality and meaning. Four major themes were identified: impact of physical s

SUBMITTER: Methley AM 

PROVIDER: S-EPMC5217881 | biostudies-literature | 2017 Feb

REPOSITORIES: biostudies-literature