Child Are you satisfied with the support you receive from your family? Do you worry about your future? Are you worried about becoming sicker? As a result of your condition are you able to participate in as many social events as you would like? Parent Do you worry about your child’s future? Do you worry about your child getting an infection from the blood they receive? Do you think your child having Thalassemia may lead to an earlier death than if they did not have the disorder? Adult Thalassemia negatively/positively affected my family Does your treatment (i.e. transportation to/from hospital, equipment, medication, parent/parents time off work) pose a financial strain for your family? Thalassemia and its treatments affect my academic performance

Table 1: Top ranked items by respondent.