Table 2 Clinical outcomes used as indicators to assess the performance of medical treatment and mental health
From: Monitoring clinical quality in rare disease services – experience in England
Condition or Service | Outcome measure |
|---|---|
Alstrom syndrome | Appropriate measure not clear, there are biochemical markers of quality of care. |
Chorioncarcinoma | Deaths |
Epidermoloysis bullosa | Appropriate measure not clear, there are biochemical markers of quality of care. |
Intestinal failure | Annual mortality |
Lysosomal storage disorders | Quality of life scales currently in development |
Mental health service for deaf adolescents | Global function score |
Obsessive compulsive disorder | Yale-Brown Obsessive Compulsive Score |
Paediatric liver disease | Heterogeneous category: five marker conditions are under consideration; Hepatoblastoma, Biliary atresia, Tyrosinaemia, Autoimmune sclerosing cholangitis, Bile acid disease. For all of these survival is the outcome indicator. |
Paediatric pulmonary hypertension | Survival |
Persistent Hyperinsulinemic hypoglycaemia of infancy (PHHI) | Survival and disability |
Secure forensic mental health service: for young people | Health of the Nation Outcome Scales for Children and Adolescents (HONOSCA) and; Health of the Nation Outcome Scales (HONOS) Secure plus global function |