Table 1.

Rank ordering of domains selected by patients and HCP, based on proportion of respondents that selected each domain in their top 10.

DomainTotal, n = 638Patients, n = 510HCP, n = 101Caregivers, n = 27p
1Muscle symptoms96.
2Fatigue82.485.966.377.8< 0.0001
3Levels of physical activity70.768.483.266.70.011
4Medication side effects65.866.759.474.10.243
6Skin symptoms54.951.672.351.90.001
7Lung symptoms53.648.883.233.3< 0.0001
8Dysphagia50.045.576.237.0< 0.0001
9Increased risk of infection43.944.934.759.30.043
10Work ability45.142.761.429.60.001
11Cognitive impact37.941.814.951.9< 0.0001
12Joint symptoms44.741.662.437.0< 0.0001
13Difficulty sleeping34.639.09.944.4< 0.0001
14Emotional distress35.737.123.855.60.003
15Gastrointestinal tract symptoms34.336.522.837.00.029
16Dryness of eyes and/or mouth27.331.65.029.6< 0.0001
17Household activities29.529.630.722.20.684
18Cardiovascular symptoms30.127.845.514.8< 0.0001
19Leisure activities25.426.721.814.80.256
20Interaction*23.524.98.951.9< 0.0001
21Personal care17.715.131.714.8< 0.0001
22Relation and/or intimacy14.114.97.922.20.085
24Social gathering11.610.816.87.40.175
  • Values are % unless otherwise specified.

  • * Interaction with healthcare personnel and authorities. Values in bold face are statistically significant. HCP: healthcare providers.