Open AccessDevelopment of a patient‐centred conceptual framework of health‐related quality of life in neuromyelitis optica: a qualitative study
Author(s) -
Methley Abigail M.,
Mutch Kerry,
Moore Perry,
Jacob Anu
Publication year - 2017
Publication title -
health expectations
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.314
H-Index - 74
eISSN - 1369-7625
pISSN - 1369-6513
DOI - 10.1111/hex.12432
Subject(s) - quality of life (healthcare) , psychology , normality , qualitative research , activities of daily living , conceptual framework , medicine , clinical psychology , developmental psychology , psychiatry , psychotherapist , social science , sociology , philosophy , epistemology
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 ( HRQ oL) in NMO is scarce, limiting knowledge on factors influencing HRQ oL and support needs. Aim This study provides the first qualitative exploration of HRQ oL 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 HRQ oL in NMO is a multifaceted concept incorporating highly subjective perceptions of normality and meaning. Four major themes were identified: impact of physical symptoms on daily living, utilizing support to achieve independence, expectations for life and meaningful roles in life and purpose. Discussion Themes highlighted the importance of perceived normality, and its relationship to attaining life goals comparable to peers, as underpinning evaluations of HRQ oL. Many people with severe disability reported a high HRQ oL, suggesting the inappropriateness of assuming a negative HRQ oL on the basis of an individual's neurological impairment. Conclusions These findings further the conceptual understanding of HRQ oL in NMO , informing patient‐care approaches and the development of an NMO ‐specific patient‐reported outcome measure.