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

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(Brooke levels, 1, 2, 3 and Brooke levels 4, 5, 6) to assess whether the basic level of muscle strength had an influence on potential progression. The Brooke upper limb scale is based on the ability to raise arm against gravity. The tasks at levels 3 and 4 can be performed by compensatory movements e.g. support from armrest. To improve reliability we defined tasks at these levels without use of armrest. The reliability of Brooke score in a SMA II population was estimated as agreement among four evaluators; there was total agreement among evaluators. Egen Klassifikation (studies I, II, III) Egen Klassifikation (EK scale) [Steffensen et al 2001, 2002] evaluates the non-ambulant patients’ overall physical function. The scale was originally constructed with ten items, each representing daily activities relevant for the patient, and an extended version with seven added items has recently been developed (EK2) [Steffensen 2008]. The scale is administered to the patients as a combination of interview on daily performance and a visual examination of the tasks that can be observed at the assessment. Each item has four categories, scaled from 0 to 3, with 0 representing highest level of function and 3 lowest level of function. The EK sum is calculated as the sum of scores of all items. The EK scale (10 items) was administered to all patients in study I and the EK2 scale (17 items) was administered to all patients in study II. Five of 17 items evaluates activities in upper limbs, and in study II the sum of these five items was calculated as “EK2 upper limb module” (illustrated in the table section in study II). In study III, the differences between EK sum at first and last assessment were calculated. Reliability has been established for the EK scale [Steffensen 2002] and the EK2 scale [Steffensen 2008] Hammersmith functional motor scale (study I) The Hammersmith functional motor scale (HFMS) for non-ambulant children with SMA was developed by Main et al [2003]. The scale has 20 items based on normal motor milestones and is scored in lying, sitting and standing position. Each item is scored from 0 to 2 based on the performance on the individual item. Maximum score is 40 corresponding to highest level of 27
function, minimum score is 0. The scale has been modified (MHFMS-SMA) with a slight change and reordering of some of the items [Krosschell 2006]. We used the original scale in our study. The reliability of the HFMS has been established in a multinational study [Mercuri et al 2006] with children from 2-12 years. Motor Function Measure (study II) The Motor Function Measure (MFM) scale was developed for patients with neuromuscular diseases to assess motor function across the range of mobility and the type of neuromuscular disorder. The scale has 32 items in three domains of function: standing and transfer, axial/proximal dimension and distal dimension. Each item is scored from 0 to 3, with 0 representing lowest level of function and 3 highest level of function; the MFM score is calculated as a percentage of highest possible score for each dimension and/ or for all dimensions. The distal dimension, MFM D3, was used in study II to evaluate upper limb function. This dimension has seven items, of which six items measure motor function in forearm and hand and one item evaluates the ability to dorsi-flex the foot. We chose to calculate the MFM D3 score with and without this item, the latter as the “MFM D3 upper limb” score (illustrated in the table section in study II). The reliability of the MFM scale has been established for patients with neuromuscular disorders from 6-62 years [Berard 2005]. Assessments at participation level Fatigue Severity Scale (study IV) The Fatigue Severity Scale (FSS) was developed to assess the self-reported impact of fatigue on daily functioning in Multiple Sclerosis (MS) and systemic lupus erythematosus (SLE) [Krupp 1989]. The scale has nine items, each of which is rated on a 7-point Likert scale ranging from “1 = strongly disagree” to “7 = strongly agree." The FSS score is calculated as the mean of all item scores. Based on results from normal populations and disease populations a FSS score ≥ 4 indicates that fatigue is a problem in daily life and a score of ≥ 5 indicates severe fatigue. The reliability of the FSS has been established in normal populations [Lerdahl 2005, Valko 2008] and various disease populations [Krupp 1989, Kleinman 2000, Hagemans 2007], but has not previously been established in neuromuscular populations. 28
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 and 6: PREFACE AND ACKNOWLEDGEMENT Three y
Page 7 and 8: ABBREVIATIONS CIS CM DMD EK EK2 ENM
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 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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