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

Table 2 Caregiver perspectives on the impact of pain on their child

Pain limits my child’s…	Never	Almost never	Some-times	Almost always	Always	Total
Ability to complete schoolwork	3 (37.5 %)	1 (12.5%)	3 (37.5)	1 (12.5%)	0	8
Ability to fall or stay asleep at night	2 (25%)	0	5 (62.5%)	0	1 (12.5%)	8
Participation in sports and recreational activities	2 (22.2%)	0	4 (44.4%)	2 (22.2%)	1 (11.1%)	9

Not all participants responded to polling questions because of fatigue, care provision, or other reasons