Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor

BackgroundPrimary orthostatic tremor (POT) is a movement disorder characterized by unsteadiness upon standing still due to a tremor affecting the legs. It is a gradually progressive condition with limited treatment options. Impairments in health-related quality of life (HQoL) seem to far exceed the...

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Main Authors: Lucie Maugest, Eavan M. McGovern, Katia Mazalovic, Mohamed Doulazmi, Emmanuelle Apartis, Mathieu Anheim, Frédéric Bourdain, Eve Benchetrit, Virginie Czernecki, Emmanuel Broussolle, Cecilia Bonnet, Bruno Falissard, Marjan Jahanshahi, Marie Vidailhet, Emmanuel Roze
Format: Article
Language:English
Published: Frontiers Media S.A. 2018-01-01
Series:Frontiers in Neurology
Subjects:
Online Access:http://journal.frontiersin.org/article/10.3389/fneur.2017.00747/full
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author Lucie Maugest
Eavan M. McGovern
Eavan M. McGovern
Katia Mazalovic
Mohamed Doulazmi
Emmanuelle Apartis
Mathieu Anheim
Mathieu Anheim
Mathieu Anheim
Frédéric Bourdain
Eve Benchetrit
Virginie Czernecki
Emmanuel Broussolle
Emmanuel Broussolle
Cecilia Bonnet
Bruno Falissard
Marjan Jahanshahi
Marie Vidailhet
Marie Vidailhet
Emmanuel Roze
Emmanuel Roze
spellingShingle Lucie Maugest
Eavan M. McGovern
Eavan M. McGovern
Katia Mazalovic
Mohamed Doulazmi
Emmanuelle Apartis
Mathieu Anheim
Mathieu Anheim
Mathieu Anheim
Frédéric Bourdain
Eve Benchetrit
Virginie Czernecki
Emmanuel Broussolle
Emmanuel Broussolle
Cecilia Bonnet
Bruno Falissard
Marjan Jahanshahi
Marie Vidailhet
Marie Vidailhet
Emmanuel Roze
Emmanuel Roze
Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor
Frontiers in Neurology
primary orthostatic tremor
movement disorder
progressive
health-related quality of life
mixed-method methodology
author_facet Lucie Maugest
Eavan M. McGovern
Eavan M. McGovern
Katia Mazalovic
Mohamed Doulazmi
Emmanuelle Apartis
Mathieu Anheim
Mathieu Anheim
Mathieu Anheim
Frédéric Bourdain
Eve Benchetrit
Virginie Czernecki
Emmanuel Broussolle
Emmanuel Broussolle
Cecilia Bonnet
Bruno Falissard
Marjan Jahanshahi
Marie Vidailhet
Marie Vidailhet
Emmanuel Roze
Emmanuel Roze
author_sort Lucie Maugest
title Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor
title_short Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor
title_full Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor
title_fullStr Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor
title_full_unstemmed Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor
title_sort health-related quality of life is severely affected in primary orthostatic tremor
publisher Frontiers Media S.A.
series Frontiers in Neurology
issn 1664-2295
publishDate 2018-01-01
description BackgroundPrimary orthostatic tremor (POT) is a movement disorder characterized by unsteadiness upon standing still due to a tremor affecting the legs. It is a gradually progressive condition with limited treatment options. Impairments in health-related quality of life (HQoL) seem to far exceed the physical disability associated with the condition.MethodsA multi-center, mixed-methodology study was undertaken to investigate 40 consecutive patients presenting with POT to four movement disorder centers in France. HQoL was investigated using eight quantitative scales and a qualitative study which employed semi-structured interviews. Qualitative data were analyzed with a combination of grounded-theory approach.ResultsOur results confirm that HQoL in POT is severely affected. Fear of falling was identified as the main predictor of HQoL. The qualitative arm of our study explored our initial results in greater depth and uncovered themes not identified by the quantitative approach.ConclusionOur results illustrate the huge potential of mixed methodology in identifying issues influencing HQoL in POT. Our work paves the way for enhanced patient care and improved HQoL in POT and is paradigmatic of this modern approach for investigating HQoL issues in chronic neurological disorders.
topic primary orthostatic tremor
movement disorder
progressive
health-related quality of life
mixed-method methodology
url http://journal.frontiersin.org/article/10.3389/fneur.2017.00747/full
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spelling doaj-d441c31092094c30b2f1e81817ff81742020-11-24T20:59:42ZengFrontiers Media S.A.Frontiers in Neurology1664-22952018-01-01810.3389/fneur.2017.00747323378Health-Related Quality of Life Is Severely Affected in Primary Orthostatic TremorLucie Maugest0Eavan M. McGovern1Eavan M. McGovern2Katia Mazalovic3Mohamed Doulazmi4Emmanuelle Apartis5Mathieu Anheim6Mathieu Anheim7Mathieu Anheim8Frédéric Bourdain9Eve Benchetrit10Virginie Czernecki11Emmanuel Broussolle12Emmanuel Broussolle13Cecilia Bonnet14Bruno Falissard15Marjan Jahanshahi16Marie Vidailhet17Marie Vidailhet18Emmanuel Roze19Emmanuel Roze20Département de Neurologie, EA 4184, Hôpital universitaire de Dijon, Dijon, FranceDepartment of Neurology, St Vincent’s University Hospital, Dublin, IrelandSchool of Medicine and Medical Sciences, University College Dublin, Dublin, IrelandDépartement de Médecine générale, Faculté de Médecine, Université de Bourgogne, Dijon, FranceSorbonne Universités, UPMC Univ Paris 06, UMR8256, INSERM, CNRS, Institut de Biologie Paris Seine, Adaptation Biologique et Vieillissement, Paris, FranceDépartement de Neurophysiologie, Hôpital de Saint-Antoine, Assistance Publique-Hôpitaux de Paris, Paris, FranceDépartement de Neurologie, Hôpitaux Universitaires de Strasbourg, Hôpital de Hautepierre, Strasbourg, FranceInstitut de Génétique et de Biologie Moléculaire et Cellulaire (IGBMC), Illkirch-Graffenstaden, FranceUniversité de Strasbourg, Fédération de Médecine Translationnelle de Strasbourg (FMTS), Strasbourg, France0Département de Neurologie, Centre médico-chirurgical Foch, Suresnes, France1Département de Neurologie, Groupe Hospitalier Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France1Département de Neurologie, Groupe Hospitalier Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France2Département de Neurologie, Service de Mouvements anormaux, Hôpital Neurologique et Neurochirurgical Pierre Wertheimer, Hospices Civils de Lyon, Lyon, France3Université de Lyon, Université Lyon I, Faculté de Médecine Lyon Sud Charles Mérieux, Institut des Sciences Cognitives Marc Jeannerod, CNRS UMR 5229, Lyon, France1Département de Neurologie, Groupe Hospitalier Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France4CESP, Univ. Paris-Sud, Université Paris-Saclay, UVSQ, INSERM U1178, Paris, France5Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, The National Hospital for Neurology and Neurosurgery, University College London, London, United Kingdom1Département de Neurologie, Groupe Hospitalier Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France6UMR S 975, CNRS UMR 7225, ICM, Sorbonne Universités, UPMC Université Paris, Paris, France1Département de Neurologie, Groupe Hospitalier Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France6UMR S 975, CNRS UMR 7225, ICM, Sorbonne Universités, UPMC Université Paris, Paris, FranceBackgroundPrimary orthostatic tremor (POT) is a movement disorder characterized by unsteadiness upon standing still due to a tremor affecting the legs. It is a gradually progressive condition with limited treatment options. Impairments in health-related quality of life (HQoL) seem to far exceed the physical disability associated with the condition.MethodsA multi-center, mixed-methodology study was undertaken to investigate 40 consecutive patients presenting with POT to four movement disorder centers in France. HQoL was investigated using eight quantitative scales and a qualitative study which employed semi-structured interviews. Qualitative data were analyzed with a combination of grounded-theory approach.ResultsOur results confirm that HQoL in POT is severely affected. Fear of falling was identified as the main predictor of HQoL. The qualitative arm of our study explored our initial results in greater depth and uncovered themes not identified by the quantitative approach.ConclusionOur results illustrate the huge potential of mixed methodology in identifying issues influencing HQoL in POT. Our work paves the way for enhanced patient care and improved HQoL in POT and is paradigmatic of this modern approach for investigating HQoL issues in chronic neurological disorders.http://journal.frontiersin.org/article/10.3389/fneur.2017.00747/fullprimary orthostatic tremormovement disorderprogressivehealth-related quality of lifemixed-method methodology