Information looked for
| No. of parents (%) | |
|---|---|
| *Information for schools (1), genetic or research updates (3), drug company information (1), general information (1). | |
| More information on diagnosed condition | 89 (84) |
| Medical treatments | 66 (62) |
| Long term outcome | 60 (57) |
| Alternative treatments | 41 (39) |
| Possible diagnoses | 40 (38) |
| Self help or patient support groups | 40 (38) |
| Other families with a child with a similar problem | 28 (26) |
| Other doctors or hospitals specialising in the condition | 22 (21) |
| Other* | 6 (6) |
| Total | 392 |
| (Total number of parents responding to question | 106) |