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Table 4 Supporting concept elicitation quotes from caregivers relating to meaningful improvements and meaningful worsening in activities of daily living (ADL)

From: Development of a Clinical Global Impression of Change (CGI-C) and a Caregiver Global Impression of Change (CaGI-C) measure for ambulant individuals with Duchenne muscular dystrophy

Concept Supporting quote on meaningful improvement Supporting quote on meaningful worsening
Washing “It would be an improvement for him to be able to do it all by himself, the whole, the whole get in, wash up, and get out and get dressed would be a big improvement.” (caregiver) “Not being able to stand in the shower that would be way worse.” (caregiver)
Dressing “Well he can do it, just—doing it with less struggle.” (caregiver) “So a worsening would be that he can’t stand up to do it comfortably.” (caregiver)
  “Figuring out how to keep him independent and able to get changed himself.” (caregiver) When he’s not able to lift his arms at all to kind of help me get his shirt on.” (caregiver)
Eating and drinking “Probably being more effective at cutting up his own food.” (caregiver) “I suppose that sort of gradual change, you know, when he can't actually cut any food at all.” (caregiver)