Categories	Codes
Disease progression	Rapid progression
	Gradual loss of ability to do the things patients used to be able to do
	Anxiety about disease progression
	Progression that does not stop even after transplantation
	Seizures
	Difficulty in managing body temperature
Complication progression	Muscle tone
	Scoliosis
	Joint contractures and dislocations
	Dystonia
Coordination of life support	Daily living care
	Bathing assistance
	Use of day service
	Use of short stay
	Use of residential facilities
	Use of day rehabilitation
Patient communication	Decreased vision
	Sensitivity to touch
	Hearing sensitivity
	Loss of responsiveness
	Children's own way of expressing themself
	What makes patient's happy
Interaction with the outside world	Interaction with others
	Behavioral restrictions due to tracheostomy
	Interaction with patient groups and close friends
	Sharing information via video
School-related issues	Relationship with school
	Burden of commuting to school
	Visiting education