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Table 3 Facets receiving unanimous support across all focus groups for construction of the MPS QOL instrument, patient version

From: Quality of life in mucopolysaccharidoses: construction of a specific measure using the focus group technique

Facet

Question

School

Are you satisfied with your school life?

Do you get along well with your teacher?

Life prospects

Do you make plans for the future?

Religiosity

Do you believe faith can help you face your problems?

Pain

Do you experience pain?

Continuity of treatment

Are you concerned about the continuity of the care you receive?

Trust in treatment

Do you trust the treatment you receive?

Family

Can you go along with your family on activities (trips, birthdays, gatherings)?

Relationship with healthcare providers

Do you get along with the professionals who take care of your health?

Acceptance

Do you take the difficulties you face in stride?

Meaning of life

Do you think your life has meaning?