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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
medicine
Initial development and validation of a mitochondrial disease quality of life scale
Neuromuscular Disorders, Volume 23, No. 4, Year 2013
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Description
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. © 2013 Elsevier B.V.
Available Materials
https://efashare.b-cdn.net/share/pmc/articles/PMC3841574/bin/mmc1.docx
https://efashare.b-cdn.net/share/pmc/articles/PMC3841574/bin/mmc2.pdf
https://efashare.b-cdn.net/share/pmc/articles/PMC3841574/bin/mmc3.docx
https://efashare.b-cdn.net/share/pmc/articles/PMC3841574/bin/mmc4.docx
https://efashare.b-cdn.net/share/pmc/articles/PMC3841574/bin/mmc5.docx
Authors & Co-Authors
Elson, Joanna L.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
South Africa, Potchefstroom
North-west University
Cadogan, M.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Apabhai, Shehnaz
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Whittaker, Roger Graham
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Phillips, A.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Trennell, M. I.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Horvàth, Rita
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Taylor, Robert William
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
McFarland, Robert M.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
McColl, Elaine M.M.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Turnbull, Douglass M.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Gorman, Gráinne S.
United Kingdom, Newcastle
University of Newcastle Upon Tyne, Faculty of Medical Sciences
Statistics
Citations: 19
Authors: 12
Affiliations: 2
Identifiers
Doi:
10.1016/j.nmd.2012.12.012
ISSN:
09608966
e-ISSN:
18732364
Research Areas
Disability
Genetics And Genomics
Health System And Policy
Study Design
Randomised Control Trial