TABLE 1.

Examples of discussion guide questions

Topic	Caregiver discussion guides	Adolescent discussion guide
Physical impacts	In terms of any physical impacts, please can you describe how achondroplasia impacts physical functioning and say a little about how these impact your child's daily life?	In terms of any physical impacts, please can you describe how achondroplasia affects your physical functioning and say a little about how these impact your daily life?
Activities of daily living	Ages 0–4 years: Does achondroplasia affect your child's ability to do activities appropriate for their age? Ages 5–17 years: Is your child able to manage their self‐care in relation to going to the toilet, washing, and dressing? (If no, do you think this will change?)	Are you able to manage your own self‐care? (going to the toilet, washing, and dressing)
Social impacts	Have there been any social impacts for your child due to achondroplasia? (How is school life for your child? How do any challenges impact your child?)	Are you affected socially because you have achondroplasia? (How is school life for you? How do any challenges affect you?)
Medical care	Tell me about your experiences with medical care for your child (Does your child have any routine follow‐up appointments related to achondroplasia? If so, how often?) (Do you have a medical provider who understands how to treat children with achondroplasia?)	Tell me about your experiences with medical care (Do you have any routine follow‐up appointments related to achondroplasia? If so, how often?) (Do you have a medical provider who understands how to treat individuals with this condition?)
Impacts on family	Do you think there are specific impacts in having a child with achondroplasia on the family overall?	Not asked
Treatments	Before we discuss specific types of treatments, it would be useful to know in general what you think about medical treatment for this condition (Have your thoughts on this changed over time at all? If so, why? What led to this change?)

Note: Examples of probes, or potential follow‐up questions after spontaneous responses to the first question, are shown in parentheses. Due to the semi‐structured nature of guide, not all probes were asked directly and moderators could also ask other follow up questions according to the flow of the discussion. Note that this table provides several examples by topic only and does not show all possible probes included in the full discussion guide.