Table 1—

Full outcome list

Outcome Question	Source
Will my child need technology to help with breathing (e.g. oxygen, tracheostomy)?	Literature, Qualitative
Will my child have trouble with breathing (e.g. wheezing)?	Literature, Qualitative
Will my child need to be hospitalized frequently?	Literature, Qualitative
Will my child need a nurse or other extra people at home to help care for him/her?	Clinician Panel
Will my child be safe at home given his/her medical needs?	Parent Panel
Will my child have trouble seeing?	Literature, Qualitative
Will my child have trouble hearing?	Literature, Qualitative
Will my child have trouble eating and growing?	Literature, Qualitative
Will my child be more vulnerable to other problems because of having lung disease?	Parent Panel
Will my child have trouble communicating?	Literature, Neurodevelopmental Assessment, Qualitative
Will my child have trouble performing everyday activities (e.g. getting dressed)?	Literature, Neurodevelopmental Assessment, Qualitative
Will my child have trouble making friends?	Literature, Neurodevelopmental Assessment, Qualitative
Will my child have trouble learning in school?	Literature, Neurodevelopmental Assessment, Qualitative
Will my child have trouble with behavior?	Literature, Neurodevelopmental Assessment, Qualitative
Will my child have trouble with moving and getting around?	Literature, Neurodevelopmental Assessment, Qualitative
Will my child have trouble with pain?	Qualitative
Will my child be happy?	Qualitative, Neurodevelopmental Assessment
Will my family have trouble with everyday activities as a result of caring for my child?	Neurodevelopmental Assessment, Qualitative
Will my family experience Financial trouble as a result of caring for my child?	Qualitative
Will my family experience family or personal conflict as a result of caring for my child?	Neurodevelopmental Assessment, Qualitative