TABLE 1.
Patient/carer demographics
| Participant number | Gender | Ethnicity | Age | Rationale for selection |
|---|---|---|---|---|
| PN001 | Male | White British | 26 | Extensive family history of similar conditions |
| PN002 | Female | White British | 30 | Recently changed allocated consultant in order to get second opinion on treatment options |
| PN003 | Male | White British | 28 | Initially treated in paediatric service, recently moved to adult service and requested change in allocated consultant |
| PN004 | Female | White British | 45 | Newly diagnosed |
| PN005 | Male | White British | 52 | Contracted viral illness as a result of receiving contaminated blood products as a child, politically active in patient support groups |
| PN006 | Male | White British | 55 | Stigmatized viral illnesses, works within health services management |
| PN007 | Male | White British | 57 | Multiple co‐morbidities, diagnosed for considerable period of time |
| PN008 | Female | White British | 53 | Long‐term relationship with consultant who recently retired, now under new consultant |
| PN009 | Female | White British | 43 | Impending change of current treatment |
| PN010 | Male | White British | 70 | Long history of illness and co‐morbidities, very active in patient groups associated with condition, politically active |
| PL001 | Male | White British | 53 | Selected by staff as 'expert patient' and participates in patient information days |
| PL002 | Female | Mixed race | 49 | Selected by staff as 'expert patient' and participates in patient information days, current treatment likely to be altered fundamentally as condition deteriorating |
| PL003 | Female | White British | 74 | Selected by staff as 'expert patient' and participates in patient information days, current treatment likely to be altered fundamentally as condition deteriorating |
| PL004 | Male | Asian | 63 | Has instituted himself as an 'expert patient' although this is not recognized by staff, active in information giving to patients both within the service and externally |
| PL005 | Female | White British | 48 | Treated in 'satellite unit' away from main hospital site, likely to require more intensive treatment as condition deteriorating. Considering transplantation which requires co‐operation of family members as potential donors |
| PL006 | Male | White British | 79 | Likely to require more intensive treatment as condition deteriorating |
| PL007 | Male | White British | 61 | Carries out intensive treatment independently at home |
| PL008 | Female | White British | 35 | Daughter of PL007 |
| PL009 | Female | White British | 71 | Diagnosed for considerable period of time, active in fundraising and community patient support groups |
| PL010 | Female | White British | 61 | Carries out home treatment, identified 'expert patient', treated out of main centre, multiple co‐morbidities |
| PL011 | Female | White British | 54 | Carries out home treatment which is failing, impending change to treatments |
| PL012 | Female | Indian | 47 | Active in patient groups, intensive treatment carried out regularly in hospital, multiple co‐morbidities, current treatment failing |
| PL013 | Female | White British | 61 | Wife of PL007, involved in home treatment |