Table 2.

Focus group health-related quality of life (HRQoL) questions.¹

HRQoL Dimension	Primary and Exemplar Follow-up Questions
Physical Functioning	In what ways does your child's medical condition affect his or her activities? Follow-up question:  How does your child's medical condition affect typical family routines?
Symptoms/Treatment	Tell me about your experiences & what you found/find stressful about your child's initial diagnosis and their treatment Follow-up question:  What symptoms, or aspects of the treatment, bother your child the most?
Psychological/Social	How do you think that your child’s condition (appearance, medical condition, parental discomfort or anxiety) affects him or her emotionally? Behaviorally? Educationally? Socially? Follow-up question:  Are you experiencing any problems with daycare/school/babysitters because of your child’s condition due to concerns about his or her physical appearance including genital status, physical functioning, or getting germs from other children?
Other	Selected examples: Was there any question at the birth about whether you should raise your child as a boy or a girl? If so, what was most difficult about this? Was it difficult informing your friends and family--especially if you had expected a child of the other sex because of ultrasounds?

¹Questions are in form used for parents; these received minor modifications to make them suitable for use with healthcare providers and advocates.