title: Initial development and validation of a mitochondrial disease quality of life scale.
abstract: Mitochondrial diseases are a clinically diverse group of genetic disorders that often present to neurologists. Health related quality of life (HRQOL) is increasingly recognised as a fundamental patient based outcome measure in both clinical intervention and research. Generic outcome measures have been extensively validated to assess HRQOL across populations and different disease states. However, due to their inclusive construct, it is acknowledged that not all relevant aspects of a specific illness may be captured. Hence there is a need to develop disease specific HRQOL measures that centre on symptoms characteristic of a specific disease or condition and their impact. This study presents the initial conceptualisation, development and preliminary psychometric assessment (validity and reliability) of a mitochondrial disease specific HRQOL measure (Newcastle Mitochondrial Quality of life measure (NMQ)). NMQ is a valuable assessment tool and consists of 63 items within 16 unidimensional domains, each demonstrating good internal reliability (Cronbach's α≥0.83) and construct validity.
authors: Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne NE1 3BZ, UK.
authors: J L
authors: JL
authors: Elson
authors: M
authors: M
authors: Cadogan
authors: S
authors: S
authors: Apabhai
authors: R G
authors: RG
authors: Whittaker
authors: A
authors: A
authors: Phillips
authors: M I
authors: MI
authors: Trennell
authors: R
authors: R
authors: Horvath
authors: R W
authors: RW
authors: Taylor
authors: R
authors: R
authors: McFarland
authors: E
authors: E
authors: McColl
authors: D M
authors: DM
authors: Turnbull
authors: G S
authors: GS
authors: Gorman
mesh_terms: D000328:Adult; D005163:Factor Analysis, Statistical; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D028361:Mitochondrial Diseases / Q000523:psychology*; D011594:Psychometrics / Q000295:instrumentation; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D055815:Young Adult