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

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Assessments at participation level Fatigue Severity Scale The prevalence of fatigue as measured by the FSS was high in patients with CM and low in patients with SMA II. The cut off FSS score ≥ 4 - indicating that fatigue is a problem in daily life - was scored by 76% of patients with CM, but only by 10% of the patients with SMA II. A FSS score ≥ 5 – indicating severe fatigue - was scored by 52% of patients with CM. There was no difference in FSS score between non-ambulant and ambulant patients with CM (p = 0.21), but women had higher FSS scores than men (p = 0.04). There were no gender differences in the SMA II group. Visual analogue scale The intensity of fatigue rated by the VAS scale was high in patients with CM and low in patients with SMA II. Median score for the CM group was 6.3 and 1.6 for the SMA II group. Ambulant patients with CM had a higher VAS score compared to non-ambulant patients (p = 0.04). There was no significant gender difference in either of the two groups. Reliability Reliability was assessed as agreement between two assessments. Correlations between test and retest of the FSS were 0.72 based on answers from ten patients with CM and 0.98 based on answers from six patients with SMA II. There were no significant differences in scores between first and second assessment in either of the groups. Out of a total of 144 pairs of ratings included in the testretest analyses, 44% were identical and 28% were within ± 1 level of disagreement. Correlation between test and retest of the VAS was very low (0.12) in six patients with CM and very high (0.99) in six patients with SMA II. In the CM group, the correlation was influenced by one patient who had diminished his score by 50% in the retest and one patient who had tripled his score in the retest. Content validity Each patient with CM responded to all nine FSS items, and the range of scores from 1-7 was used in all items. Among SMA II patients, 50% did not respond to item 2, and the range of scores from 1 39
– 7 was used in only three items (2, 3 and 4). Distributions of FSS scores for the two disease groups are illustrated in figure 9 a. and 9 b. Item 1 Item 2 Item 3 Item 4 Item 5 Item 6 Item 7 Item 8 Item 9 score 1 score 2 score 3 score 4 score 5 score 6 score 7 0% 20% 40% 60% 80% 100% Figure 9 a. Distribution of scores on the 9 FSS items for 71 patients with congenital myopathies. The range of scores (1-7) was used in all items. Item 1 Item 2 Item 3 Item 4 Item 5 Item 6 Item 7 Item 8 Item 9 score 1 score 2 score 3 score 4 score 5 score 6 score 7 0% 20% 40% 60% 80% 100% Figure 9 b. Distribution of scores on the 9 FSS items for 29 patients with SMA II. The range of scores (1-7) was used in items 2, 3 and 4. Minimum and maximum scores were used in all items except item 8. In items 5, 8 and 9 minimum score was used by ≥ 50% of the patients. The focus-group interviews indicated that the FSS in general were relevant and meaningful for patients with CM, but also that the FSS did not cover all aspects of fatigue in this group of patients. Several participants in the focus-groups commented that physical fatigue as measured by the FSS 40
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 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 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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