Ulla Werlauff Methods to assess physical functioning - Danske ...

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Ann-Lisbeth Højberg, OT MSi, co-author in the paper on fatigue, colleague and friend. It is a great pleasure and always inspiring to work with you. Thank you for caring and for our enriching discussions, also on subjects that not relate to research. Susanne Berthelsen, Ida Fløytrup, Bente Kristensen and Birgit Werge, PTs’, colleagues and co-authors in the cross-sectional study on SMA. Thank you for your collaboration and for collecting data for the longitudinal study. All my colleagues at the Danish National Rehabilitation Centre for Neuromuscular Diseases. After periods “out of house” I have always enjoyed being back in the office with good colleagues, good talks and good laughs. It means a lot. Susanne Rosthøj, statistician PhD, for helping me with the statistical calculations in the longitudinal paper. Rasmus Firla-Holme, co-author in the fatigue paper, for working out the statistics in the analysis of the psychometric properties of the Fatigue Severity Scale. Gert, my husband, thank you for your support and understanding when days were long and sometimes gloomy, and Christine and Kasper, thank you for your encouragement and firm belief that I could do it. This study was supported by the Danish National Rehabilitation Centre for Neuromuscular Diseases and Danske Fysioterapeuters Forskningsfond. 5
ABBREVIATIONS CIS CM DMD EK EK2 ENMC FSS FVC HFMS HHD ICF MFM MFM D3 MMO MMT MRC MS NMD PCA PRO ROM SLE SMA SMN VAS Checklist individual strength Congenital myopathy Duchenne muscular dystrophy Egen Klassifikation Egen Klassifikation – extended version European Neuromuscular Centre Fatigue Severity Scale Forced vital capacity Hammersmith functional motor scale Hand Held Dynamomter International Classification of Functioning, Disability and Health Motor Function Measure Motor Function Measure - Distal dimension Maximal mouth opening Manual muscle test Medical Research Council Multiple Sclerosis Neuromuscular Diseases Principal Component analysis Patient reported outcome measures Range of motion Systemic lupus erythematosus Spinal muscular atrophy Survival motor neuron Visual Analog Scale 6
Page 1 and 2: F A C U L T Y O F H E A L T H A N D
Page 3 and 4: CONTENTS PREFACE AND ACKNOWLEDGEMEN
Page 5: PREFACE AND ACKNOWLEDGEMENT Three y
Page 9 and 10: SUMMARY ENGLISH Neuromuscular disor
Page 12 and 13: INTRODUCTION Neuromuscular diseases
Page 14 and 15: which alone or in combination provi
Page 16 and 17: (HFMS) for SMA assesses motor funct
Page 18: Spinal muscular atrophy Spinal musc
Page 22 and 23: PATIENTS AND METHODS Study I and II
Page 24 and 25: the Danish National Rehabilitation
Page 26 and 27: evaluators was estimated. Scores we
Page 28 and 29: (Brooke levels, 1, 2, 3 and Brooke
Page 30 and 31: Visual Analog Scale (study IV) The
Page 32 and 33: RESULTS Assessments at impairment l
Page 34 and 35: MRC % 45 40 35 30 25 20 15 10 5 0 1
Page 36 and 37: upper limb scale -0.627). There was
Page 38 and 39: The EK2 sum score could discriminat
Page 40 and 41: Assessments at participation level
Page 42 and 43: was part of their fatigue experienc
Page 44: Study IV Fatigue is a characterist
Page 47 and 48: population. The disease/condition s
Page 49 and 50: models of measurement and the neces
Page 51 and 52: Brooke upper limb scale We consider
Page 53 and 54: Assessments at participation level
Page 56 and 57:
CONCLUSION In this study we have ma
Page 58 and 59:
Brooke MH, Griggs RC, Mendell JR,Fe
Page 60 and 61:
Gagnon C, Mathieu J, Jean S, Laberg
Page 62 and 63:
Krupp LB, LaRocca NG, Muir-Nash J,
Page 64 and 65:
Mills R, Young C, Nicholas R, Palla
Page 66 and 67:
Steffensen B, Mayhew A, Aloysius A.
Page 68:
WHO International Classification of
Page 71 and 72:
Egen Klassifikation (EK) scale (Ste
Page 73 and 74:
The Hammersmith functional motor sc
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