Article Figures & Data
Tables
- Table 1.
Rank ordering of domains selected by patients and HCP, based on proportion of respondents that selected each domain in their top 10.
Domain Total, n = 638 Patients, n = 510 HCP, n = 101 Caregivers, n = 27 p 1 Muscle symptoms 96.2 96.1 99.0 88.9 0.045 2 Fatigue 82.4 85.9 66.3 77.8 < 0.0001 3 Levels of physical activity 70.7 68.4 83.2 66.7 0.011 4 Medication side effects 65.8 66.7 59.4 74.1 0.243 5 Pain 59.9 59.4 59.4 70.4 0.524 6 Skin symptoms 54.9 51.6 72.3 51.9 0.001 7 Lung symptoms 53.6 48.8 83.2 33.3 < 0.0001 8 Dysphagia 50.0 45.5 76.2 37.0 < 0.0001 9 Increased risk of infection 43.9 44.9 34.7 59.3 0.043 10 Work ability 45.1 42.7 61.4 29.6 0.001 11 Cognitive impact 37.9 41.8 14.9 51.9 < 0.0001 12 Joint symptoms 44.7 41.6 62.4 37.0 < 0.0001 13 Difficulty sleeping 34.6 39.0 9.9 44.4 < 0.0001 14 Emotional distress 35.7 37.1 23.8 55.6 0.003 15 Gastrointestinal tract symptoms 34.3 36.5 22.8 37.0 0.029 16 Dryness of eyes and/or mouth 27.3 31.6 5.0 29.6 < 0.0001 17 Household activities 29.5 29.6 30.7 22.2 0.684 18 Cardiovascular symptoms 30.1 27.8 45.5 14.8 < 0.0001 19 Leisure activities 25.4 26.7 21.8 14.8 0.256 20 Interaction* 23.5 24.9 8.9 51.9 < 0.0001 21 Personal care 17.7 15.1 31.7 14.8 < 0.0001 22 Relation and/or intimacy 14.1 14.9 7.9 22.2 0.085 23 Incontinence 11.0 12.7 3.0 7.4 0.013 24 Social gathering 11.6 10.8 16.8 7.4 0.175 Values are % unless otherwise specified.
↵* Interaction with healthcare personnel and authorities. Values in bold face are statistically significant. HCP: healthcare providers.
- Table 2.
Weighted rank ordering of domains selected by patients based on proportion of respondents who selected each domain in their top 5 according to countries (based on Question 15).
Domains Total, n = 510 Australia, n = 25 Netherlands, n = 27 Sweden, n = 29 USA, n = 339 p 1 Muscle symptoms 3.45 ± 1.86 3.6 ± 1.96 3.22 ± 1.93 3.28 ± 2.05 3.47 ± 1.84 0.838 2 Fatigue 1.98 ± 1.77 2.12 ± 1.83 2.85 ± 1.85 1.17 ± 1.58 1.97 ± 1.75 0.005 3 Pain 1.32 ± 1.81 1.76 ± 2.09 0.81 ± 1.55 0.45 ± 0.95 1.4 ± 1.85 0.012 4 Lung symptoms 0.99 ± 1.77 0.8 ± 1.55 2.04 ± 2.08 2.86 ± 2.18 0.76 ± 1.59 < 0.0001 5 Skin symptoms 0.99 ± 1.65 0.8 ± 1.47 0.56 ± 1.09 0.59 ± 1.3 1.07 ± 1.72 0.187 6 Levels of physical activity 0.92 ± 1.39 1.2 ± 1.5 0.89 ± 1.25 0.45 ± 0.83 0.95 ± 1.43 0.214 7 Medication side effects 0.76 ± 1.35 1.2 ± 1.44 1.15 ± 1.54 1.14 ± 1.53 0.67 ± 1.3 0.033 8 Dysphagia 0.71 ± 1.46 0.36 ± 0.91 0.33 ± 1.21 0.86 ± 1.68 0.76 ± 1.48 0.275 9 Cognitive impact 0.59 ± 1.27 0.48 ± 1 0.3 ± 0.95 0.17 ± 0.47 0.65 ± 1.35 0.136 10 Increased risk of infection 0.45 ± 1.09 0.48 ± 1.23 0.41 ± 1.01 0.97 ± 1.4 0.41 ± 1.05 0.073 11 Difficulty sleeping 0.4 ± 1.02 0.28 ± 1.06 0.22 ± 0.8 0.03 ± 0.19 0.45 ± 1.06 0.122 12 Joint symptoms 0.39 ± 1.03 0.32 ± 0.9 0.37 ± 0.93 0.66 ± 1.2 0.37 ± 1.03 0.546 13 Gastrointestinal tract symptoms 0.34 ± 0.98 0.28 ± 0.74 0.41 ± 1.05 0.24 ± 0.99 0.35 ± 0.99 0.910 14 Cardiovascular symptoms 0.29 ± 0.99 0.44 ± 1.39 0.48 ± 1.31 0.86 ± 1.62 0.21 ± 0.83 0.003 15 Emotional distress 0.28 ± 0.88 0.24 ± 0.72 0.15 ± 0.53 0.45 ± 0.95 0.28 ± 0.9 0.631 16 Work ability 0.25 ± 0.81 0.08 ± 0.4 0.15 ± 0.36 0.21 ± 0.94 0.27 ± 0.85 0.591 17 Interaction* 0.22 ± 0.86 0.04 ± 0.2 0 ± 0 0.52 ± 1.06 0.23 ± 0.9 0.097 18 Dryness of eyes and/or mouth 0.16 ± 0.6 0.04 ± 0.2 0.04 ± 0.19 0.07 ± 0.37 0.19 ± 0.65 0.312 19 Incontinence 0.13 ± 0.61 0.12 ± 0.44 0 ± 0 0 ± 0 0.15 ± 0.67 0.385 20 Relation and/or intimacy 0.09 ± 0.49 0.16 ± 0.8 0.22 ± 0.97 0 ± 0 0.08 ± 0.42 0.317 21 Leisure activities 0.09 ± 0.44 0.2 ± 0.71 0.26 ± 0.86 0.03 ± 0.19 0.07 ± 0.38 0.085 22 Household activities 0.08 ± 0.42 0 ± 0 0 ± 0 0 ± 0 0.09 ± 0.47 0.358 23 Personal care 0.06 ± 0.43 0 ± 0 0 ± 0 0 ± 0 0.08 ± 0.48 0.535 24 Social gathering 0.05 ± 0.35 0 ± 0 0.15 ± 0.6 0 ± 0 0.04 ± 0.35 0.346 Values are mean ± SD.
↵* Interaction with healthcare personnel and authorities. Values in bold face are statistically significant.
Domains Total, n = 510 DM, n = 238 PM, n = 212 Others†, n = 60 p 1 Muscle symptoms 3.43 ± 1.88 3.34 ± 1.91 3.7 ± 1.75 2.85 ± 2.04 0.005 2 Fatigue 1.89 ± 1.78 1.89 ± 1.76 1.85 ± 1.81 2.02 ± 1.76 0.823 3 Pain 1.33 ± 1.83 1.39 ± 1.8 1.27 ± 1.84 1.28 ± 1.97 0.752 4 Lung symptoms 1.03 ± 1.78 0.83 ± 1.62 0.95 ± 1.73 2.1 ± 2.18 < 0.0001 5 Skin symptoms 0.96 ± 1.64 1.78 ± 1.95 0.25 ± 0.81 0.23 ± 0.79 < 0.0001 6 Levels of physical activity 0.91 ± 1.4 0.71 ± 1.23 1.11 ± 1.53 1 ± 1.45 0.009 7 Medication side effects 0.79 ± 1.37 0.63 ± 1.21 0.96 ± 1.5 0.88 ± 1.43 0.033 8 Dysphagia 0.7 ± 1.45 0.79 ± 1.45 0.64 ± 1.45 0.58 ± 1.44 0.440 9 Cognitive impact 0.56 ± 1.25 0.58 ± 1.26 0.54 ± 1.22 0.58 ± 1.34 0.940 10 Increased risk of infection 0.47 ± 1.11 0.52 ± 1.17 0.38 ± 0.97 0.63 ± 1.28 0.218 11 Joint symptoms 0.41 ± 1.05 0.4 ± 1.06 0.4 ± 1.03 0.5 ± 1.11 0.786 12 Difficulty sleeping 0.4 ± 1.02 0.35 ± 0.99 0.48 ± 1.09 0.33 ± 0.9 0.380 13 Work ability 0.32 ± 0.91 0.23 ± 0.71 0.38 ± 1.01 0.45 ± 1.16 0.094 14 Gastrointestinal tract symptoms 0.3 ± 0.94 0.29 ± 0.99 0.34 ± 0.92 0.22 ± 0.78 0.654 15 Emotional distress 0.29 ± 0.88 0.26 ± 0.89 0.33 ± 0.9 0.23 ± 0.74 0.676 16 Cardiovascular symptoms 0.28 ± 0.97 0.26 ± 0.91 0.35 ± 1.1 0.13 ± 0.6 0.252 17 Interaction* 0.2 ± 0.82 0.18 ± 0.79 0.23 ± 0.88 0.22 ± 0.72 0.774 18 Dryness of eyes and/or mouth 0.18 ± 0.66 0.23 ± 0.79 0.13 ± 0.5 0.17 ± 0.56 0.307 19 Incontinence 0.11 ± 0.56 0.06 ± 0.43 0.18 ± 0.69 0.08 ± 0.53 0.057 20 Relation and/or intimacy 0.11 ± 0.53 0.1 ± 0.49 0.12 ± 0.52 0.13 ± 0.7 0.856 21 Leisure activities 0.09 ± 0.45 0.04 ± 0.33 0.16 ± 0.56 0.07 ± 0.36 0.017 22 Household activities 0.09 ± 0.44 0.06 ± 0.31 0.1 ± 0.45 0.18 ± 0.75 0.140 23 Personal care 0.07 ± 0.45 0.08 ± 0.45 0.06 ± 0.45 0.08 ± 0.42 0.919 24 Social gathering 0.05 ± 0.34 0.01 ± 0.13 0.09 ± 0.49 0.03 ± 0.18 0.037
In this issue
Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study
