Table 1.

Abbreviated interview guide

Key questions: 1) What are your worries about… 2) What are your care needs for…	Probes
Transition from pediatric to adult care?	Transition to adult health care, change in physician, transition to adult life, transition to work, independent living
Medical issues?	Symptoms, NF1‐related care, medication, care consultations
Psychological and behavioral issues?	Sleeping problems, ADHD, ASD, depression, anxiety
Social life?	Friendships, romantic relationships, family, family planning, loneliness, sexuality
Work and daily activities?	Work, school, independence, finances, daily living
Paramedical issues?	Language problems, nutrition, motor skills