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Table 1 Aspects of MPS VI function that caregivers find the most bothersome or challenging for their child

From: Mucopolysaccharidosis type VI (Maroteaux-Lamy syndrome): defining and measuring functional impacts in pediatric patients

Aspect Most bothersome/challenging
First Second Third Fourth
Mobility including ambulation and stairs 3 (33.3%) 2 (22.2%) 1 (14.3%) 1 (14.3%)
Independence in dressing and using the bathroom 3 (33.3%) 0 (0%) 1 (14.3%) 0 (0%)
Fine motor tasks like writing, using a computer mouse/keyboard or grasping small items 0 (0%) 0 (0%) 1 (14.3%) 4 (57.1%)
Pain 1 (11.1%) 6 (66.7%) 0 (0%) 0 (0%)
Sleep 2 (22.2%) 1 (11.1%) 0 (0%) 2 (28.6%)
Fatigue 0 (0) 0 (0) 4 (57.1%) 0 (0%)
Total 9 9 7 7
  1. Not all participants responded to polling questions because of fatigue, care provision, or other reasons