Table 3.

Quotes on disengaged patients

Disengagement in certain groups

I keep banging on about, you know, our complex group of patients, because they are. But we do have one end of the scale with the old fashioned, typical head and neck patient that prop the bar up and smoked countless amounts of cigarettes, to the HPV typical patient that we're seeing now (064, clinical nurse specialist) A lot of the head and neck cancer patients … the traditional smoker, drinkers, we struggle to get them to come for follow-up. So, I think we've got to be careful about recruiting these patients (011, oncologist) How well they're [patients] educated is an important factor. They are likely to pick up the cancer much sooner if they notice any change compared to somebody who is poor socioeconomic [status] (056, surgeon) A small group of [lower socioeconomic status] patients … will say ‘just do what you think is right’. They don't want to know, you know? I would not trust them, not because I don't like them, it's just that I can't trust them to make a sensible decision to come back if they have a concern (056, surgeon) We have some patients that don't come to any follow-ups. I think those patients, because of their sociological backgrounds, they don't engage with health (023, speech and language therapist)

Inclusion in PETNECK2 trial

Somebody who struggles to attend an appointment or finds themselves in the pub very first thing in the morning is not the candidate [for this trial] (056, surgeon) The type of people who you get, who will engage with the trial, are the kind of people who are taking a bit more responsibility for their own health and engaging in health. And so what you find from your trial might be completely different to the clinical head and neck picture (008, speech and language therapist)

HPV, human papillomavirus.