scholarly journals Outcome measures for children with mitochondrial disease: consensus recommendations for future studies from a Delphi-based international workshop

2018 ◽  
Vol 41 (6) ◽  
pp. 1267-1273 ◽  
Author(s):  
Saskia Koene ◽  
Lara van Bon ◽  
Enrico Bertini ◽  
Cecilia Jimenez-Moreno ◽  
Lianne van der Giessen ◽  
...  
2013 ◽  
Vol 23 (12) ◽  
pp. 1056-1068 ◽  
Author(s):  
Cynthia Gagnon ◽  
Giovanni Meola ◽  
Luc J. Hébert ◽  
Jack Puymirat ◽  
Luc Laberge ◽  
...  

2017 ◽  
Vol 27 ◽  
pp. S3
Author(s):  
S. Koene ◽  
I. de Groot ◽  
M. de Vries ◽  
L. de Boer ◽  
M.C.H. Janssen ◽  
...  

2013 ◽  
Vol 84 (11) ◽  
pp. e2.111-e2
Author(s):  
Jane Newman ◽  
Brook Galna ◽  
Djordje Jakovljevic ◽  
Matthew Bates ◽  
Andrew Schaefer ◽  
...  

Author(s):  
Peggy M.J. Bergs ◽  
Daphne M. Maas ◽  
Mirian C.H. Janssen ◽  
Jan T. Groothuis

2015 ◽  
Vol 2 (2) ◽  
pp. 151-155 ◽  
Author(s):  
Jane Newman ◽  
Brook Galna ◽  
Djordje G. Jakovljevic ◽  
Matthew G. Bates ◽  
Andrew M. Schaefer ◽  
...  

2014 ◽  
Vol 40 (2) ◽  
pp. 158-169 ◽  
Author(s):  
Elisa Bettoni ◽  
Giorgio Ferriero ◽  
Hadeel Bakhsh ◽  
Elisabetta Bravini ◽  
Giuseppe Massazza ◽  
...  

Background:Assessment of patient satisfaction with orthosis is a key point for clinical practice and research, requiring questionnaires with robust psychometric properties.Objectives:To identify which validated questionnaires are used to investigate patient satisfaction with orthosis in limb orthotics and to analyse (1) their main fields of clinical application, (2) the orthosis-related features analysed by the questionnaires and (3) the strength of their psychometric properties.Study design:Systematic review.Methods:A literature search using MEDLINE (PubMed), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Scopus databases for original articles published within the last 20 years was performed.Results:A total of 106 papers pertaining to various clinical fields were selected. The main features of patient satisfaction with orthosis analysed were as follows: aesthetic, ease in donning and doffing the device, time of orthotic use and comfort.Conclusion:Of the questionnaires used to investigate patient satisfaction with orthosis, only four are adequately validated for this purpose: two for generic orthotic use (Quebec User Evaluation of Satisfaction with assistive Technology 2.0 and Client Satisfaction with Device of Orthotics and Prosthetic Users’ Survey) and two for specific application with orthopaedic shoes (Questionnaire for the Usability Evaluation of orthopaedic shoes and Monitor Orthopaedic Shoes). Further development, refinement and validation of outcome measures in this field are warranted.Clinical relevanceGiven the importance of analysing patient satisfaction with orthosis (PSwO), appropriate instruments to assess outcome are needed. This article reviews the currently available instruments and reflects on how future studies could be focused on the development, refinement and validation of outcome measures in this field.


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