Table 1. Final version of interview topic guide.

General probes: How did that make you feel? How did you deal with that? How do you think you will manage that? What do you think will happen?

Prognosis—What have you been told about your illness? Immediate reactions Perception of illness—What did you think that would mean? Current situation—Do you know how it developed? Information Access—What have you found out about your illness and how? Wellbeing—What makes you feel you’ve had a good day? Coping—How do you manage the difficult aspects of being ill? Aims—Have you chosen to do any new things since being ill? Changes—Is there anything you do differently than before, better or worse? Significant events— Perception of illness—Has how you feel about being ill changed since you first found out? Anything else to add?