Table 2.
Stakeholder consultation participant characteristics.
| Focus group | Total | |||
|---|---|---|---|---|
| 1 | 2 | 3 | ||
| Mode of delivery | Virtual | Face-to-face | Face-to-face | |
| Number of participants | 7 | 4 | 6 | 17 |
| Type of participant | ||||
| Patients | 4 | N/A | 2 | 6 |
| Parents/carers1 | 3 | N/A | 4 | 7 |
| Healthcare professionals2 | N/A | 4 | N/A | 4 |
| Gender | ||||
| Male | 1 | 0 | 3 | 4 |
| Female | 6 | 4 | 3 | 13 |
| Age | ||||
| 29–59 | 6 | N/A | 3 | 9 |
| 60+ | 1 | N/A | 2 | 3 |
| Not specified | 0 | N/A | 1 | 1 |
| Diagnosis | ||||
| One specific rare condition | 4 | N/A | 3 | 7 |
| Multiple chronic conditions (including at least one rare condition) | 2 | N/A | 3 | 5 |
| Undiagnosed | 1 | N/A | 0 | 1 |
| Number of regions3 represented | 4 | 3 | 4 | 7 |
Note: 1 Parents and carers were included to capture views of caring for adults (n = 2) and children (n = 4) with rare, ultra-rare or undiagnosed conditions.
2 Job roles included consultants, nurses and a representative from a rare disease organisation (who had previous experience as a healthcare professional). In addition to their clinical role, one healthcare professional also worked for a rare disease organisation.
3 Regions refers to regions within the United Kingdom, including regions within England, in addition to Scotland, Wales and Northern Ireland.
N/A = not applicable as patients/carers and healthcare professionals were asked different eligibility questions.