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Table 1 Categories and descriptions of the RAHC MOF scale[16]

From: Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Category Description
1. Superior No symptoms; physically able; excellent relationships with family and friends; wide range of extra-curricular activities; doing well at school/preschool; developing normally; everyday problems never get out of hand.
2. Good in all areas Virtually no symptoms; usually copes well; physically able; good relationships; normal play & leisure activities; school/preschool OK; may have problems when stressed but these are short lived and only occasionally get out of hand.
3. No more than slight problems Some significant symptoms, only briefly get out of hand; sometimes child gets distressed; short term or little interference with mobility or relationships or play & leisure activities; school/preschool may be slightly affected or affected for a short time.
4. Some difficulty in a single area but generally pretty well Mild symptoms which recover quickly with treatment; any distress or disability does not stop child from doing most things at that age; some anxiety or irritability or brief mood changes; minor effect on mobility or school/preschool or relationships or play & leisure activities; problems may persist but may only be recognized by those who know the child.
5. Variable problems in some but not all areas Moderate symptoms have significant disabling effect on child; minor to moderate effect on mobility; school/preschool may be affected; may need special education; in some situations may seem O.K.; mainly managed in outpatient clinic or family doctor.
6. Severe problems in one area OR moderate problems in most areas Severe symptoms having a major effect on child’s life; restricted mobility; relationships or play & leisure activities are affected; child is distressed or has difficult behavior; some relationships are maintained; learning difficulties or problems with or missing school; likely to have been seen by specialist.
7. Major problems in several areas AND unable to function in one of these areas. Severe, almost constant symptoms; child is distressed, withdrawn or has strange or aggressive behaviour; significant limitations on mobility or school/preschool or relationships or play & leisure activities; specialist management needed.
8. Unable to function in almost all areas Very severe symptoms; child is very distressed; likely to be confined to bed; unable to go to school/preschool; may be in hospital but child is not entirely dependent on others.
9. Needs nursing supervision Confined to bed; in hospital; very severe symptoms but stable; needs help with self-care which a child the same age can do without help.
10. Needs constant supervision High (24 hrs) medical dependence e.g. In intensive care unit; life-threatening symptoms.