Quotes from patients

Reasons for their level of involvement in TDM

[Individual differences]: ‘every patient is different…there probably are patients who just rely on their specialist…most are happy to just ‘get on with it gov’, whereas I was always asking questions and that’s what I would recommend to other patients, is try to understand and be proactive… that way at least when [there’s] any option to decide if I can feel confident that’s the best available for me’ (P3)

[Decisional complexity]: ‘in an ideal world it would be myself, me and the doctors [who share TDM] because to me, they’ve got so much knowledge about this thing that I don’t know anything about… I’d just like to have something [simple] like, Oh, you’ve got appendicitis’…but I’m not in that situation. It is complex…they don’t know all the answers…because there’s different types of it [myeloma] and I don’t fully get the reasons why everyone reacts differently [to treatment]’ (P35)

[Information access]: ‘I’m not an internet person…it annoys me, the internet’ (P15)

[Information understanding]: ‘Not everyone is equipped to sort of read some of the literature because…it is a little bit challenging…and time consuming’ (R, P6)

[Information retention]: ‘We were given some leaflets…but I’m a bit fuzzy…since I’ve had my cancer my memory has gone to shot’ (P16)

[Physical/emotional state]: ‘I was so rock bottom, I guess I just went along with it all…they knew what they were doing’ (P8)

[Coping mechanism]: ‘there are some people who want to know every detail about every treatment and how it affects them…I’m scared to do that’ (P35)

[Personal preference (for proactive role)]: ‘PatientView [portal for accessing patient electronic record]…that’s fantastic because I can see things, so your platelets, white [blood cells]…haemoglobin…it’s a fantastic bit of information for me prior to my consultant appointment…having that extra information, for me, is very valuable…I can point out…to the consultant…so what’s this about…you know, why’s that gone up?’ (P28)

[Personal circumstances]: ‘your mind is concentrating on other things...is it life threatening…am I going to be able to work anymore…have I got to retire…you’ve got the financial aspects…making sure your family is looked after…your brain is working on so many different levels…you tend to accept what’s [treatment] being given’ (P16)

[Level of support]: ‘that’s what I miss, because I have to do all my own research…and sometimes I think I just wish I had that person… [for support]’ (P33)

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