Table 1

Interview guide

TopicExamples of questions
Everyday lifeHow would you say it affects your life today, that you had retinoblastoma (RB) as a child?
Does RB impact your social life? When/how?
Would you say that RB has impacted you mentally?
When is RB most present in your life?
Has RB hindered you in participating or doing activities, that you wanted to do or participate in?
Do you think that you look 'different'? Do people notice? If yes, how do you feel about that?
Do you appreciate it when others take your visual impairment into consideration (eg, in social contexts)?
Heredity and cancer riskWhen and how did you find out about the increased risk for other cancers?
How did—and does—that information affect you?
Has it influenced your everyday life?
Is it good to know about this increased risk?
Have you sought more information about it, for example, online?
Heredity and familyWho else in your family has RB and how has it—from your point of view—affected your family life?
Does RB influence your considerations about having children? Can you tell me a little about that?
Why is it important for you that your future child does not have RB?
Can you tell me about your choice of [prenatal testing or pre-implantation genetic testing]?
Healthcare sectorWhat are the strengths and limitations of the way RB survivor care is organized?
What is your experience with the RB survivor clinic?
What do those visits mean to you, and what is most important to you?
Have you ever made changes in your everyday life following a consultation at the RB clinic?
Is there anything you need/miss or would like in RB survivor care?
What can the health care system do to better fit your needs, and make your life easier?
  • [text]: Explained in layman’s language.

  • *The full interview guide (in Danish) can be obtained from the first author on reasonable request.