4 results match your criteria: "The NEMO Clinical Center (NEuroMuscular Omnicenter - Fondazione Serena Onlus)[Affiliation]"
Purpose: The aim of this study was to adapt the Upper Extremity Functional Index (UEFI) to an Italian population affected by Facioscapulohumeral muscular dystrophy (FSHD) by translating and validating this instrument in an Italian cohort.
Materials And Methods: Five Italian FSHD patients were interviewed regarding the form and content of the translated instrument. Subsequently, fifty-two patients were recruited for the validation purpose by serially completing the UEFI-IT and a battery of clinical assessments and questionnaires.
Purpose: The aim of this study was to adapt the Facioscapulohumeral Muscular Dystrophy - Health Index (FSHD-HI) to an Italian population affected by FSHD by translating, validating, and testing this instrument in an Italian cohort.
Materials And Methods: Italian FSHD patients were interviewed regarding the form and content of the translated instrument. Subsequently, forty FSHD patients were recruited to test the reliability (Intraclass Correlation Coefficient, ICC for test-retest; and Cronbach's Alpha for Internal consistency), known groups (Mann-Whitney U test and Area Under the Curve, AUC) and concurrent validity (Pearson's and Spearman's Rank Correlation Coefficient) of the instrument by serially completing the FSHD-HI and an extensive set of tests measuring the neuromotor, psychological and cognitive functions, and perceived quality of life (QoL) aspects.
Being Yourself and Thinking About the Future in People With Motor Neuron Disease: A Grounded Theory of Self-care Processes.
J Neurosci Nurs
June 2018
Questions or comments about this article may be directed to Barbara Bassola, MSC RN, at She is a PhD Student, University of Rome "Tor Vergata," Rome; and a Nurse Lecturer and Tutor, Niguarda Hospital, University of Milan, Milan, Italy. Valeria Ada Sansone, MD, is Researcher, The NEMO Clinical Center (NEuroMuscular Omnicenter-Fondazione Serena Onlus), and Department of Biomedical Sciences for Health, University of Milan, Milan, Italy. Maura Lusignani, MSC RN, is Associate Professor, Biomedical Sciences for Health, University of Milan, Milan, Italy.
Introduction: Self-care is a crucial aspect in the management of people with motor neuron disease (MND). Nurses and healthcare professionals must know the processes used by patients in performing self-care to identify problems and help them. Decision-making processes, self-understanding, and political and social support influence the self-care process in chronic diseases.
View Article and Find Full Text PDFThe Myotonic Dystrophy Health Index: Italian validation of a disease-specific outcome measure.
Neuromuscul Disord
November 2017
The University of Rochester Medical Center, Department of Neurology, 601 Elmwood Avenue, Rochester, New York, USA.
The Myotonic Dystrophy Health Index (MDHI) is a disease-specific, self-reported outcome measure that assesses total disease burden and 17 areas of Myotonic Dystrophy type 1 (DM1) specific health. This study translated the MDHI into Italian and validated the instrument using a cohort of Italian DM1 patients. Italian DM1 patients were interviewed regarding the form and content of the instrument.
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