Table 2 Questions suggested by the adolescent MPS patient, adult MPS patient, children patient, caregiver, and healthcare providers focus groups for construction of the MPS QOL instrument, patient version
Focus group | Suggested question | Facet |
|---|---|---|
Healthcare providers | Do you sleep well? | Sleep |
Children with MPS | Do you wake up feeling tired or refreshed? | |
Caregivers | How do you feel about your sleep? | |
Healthcare providers | Do you get along well with your family? | Family |
Does your family provide support when you need it? | ||
How is your family important in your life? | ||
Children with MPS | Do you love your family? | |
Are you treated well by your family? | ||
Healthcare providers | Do you get along well with your classmates? | School |
Caregivers | Do you have enough freedom to do what you like? | Autonomy |
Children with MPS | Do your parents do things for you (offer lots of help)? | |
Caregivers | Are you satisfied with your life? | Satisfaction with life |
Caregivers | Is having Social Security benefits important to you? | Social security |
Healthcare providers | Would you need health insurance to supplement your treatment? | |
Adults with MPS | Do you think your health condition gets in the way of your work? | Work |
Healthcare providers | Do you think your rights are respected? | Rights |
Do you feel well-informed about your rights? | ||
Caregivers | Did you receive guidance about your condition? | Knowledge of disease |
How important is it to you to have knowledge of your condition? | ||
Healthcare providers | Do you have any doubts about your condition? | |
What is the extent of your knowledge (or understanding) about the hereditary nature of your condition? | ||
Healthcare providers | Are you satisfied with your care environment? | Treatment |
Healthcare providers | Are you satisfied with your sex life? | Sex/love life |
Healthcare providers | Are you satisfied with your love life? | |
Children with MPS | Do you feel cheerful? Do you feel motivated to do things? | Energy |
Children with MPS | Are you satisfied with your ability to play? | Leisure |
Children with MPS | Do you feel like the others? | Appearance |
Children with MPS | Do you feel that people ignore you? | Social relationships |
Children with MPS | Are you satisfied with your savings? Insert $$ | Finance |