Table 4

Recurring themes: examples of free answer texts

Themes in responsesQuotes from people living with MarfanQuotes from doctors
Maintaining as normal a life as possible‘I’d rather get it over and done with rather than have it hanging over my head as some dreaded event in the future’ (Respondent 131, male, age 64).
‘My aneurism [sic] has been stable. I don’t feel myself at all in danger. To have a surgery will change my life.’ (Respondent 40, male, age 40)
‘Having known I would need surgery from a fairly young age, as the time passed, I just wanted the surgery done so I could get on with my life.’ (Respondent 45, female, age 25)
I want to live as ’normal' a life as possible, I feel being on long term medication, would not help in this aim.’ (Respondent 27, female, 53)
‘I am reluctant to recommend early intervention if there is not a clear indication (there is a risk of over-treatment).’ (Respondent 38, doctor)
‘Taking life time medication not important unless there are important adverse effects (eg, impotence).’ (Respondent 8, doctor)
Preserving a good quality of life‘Take the medicine and live a reasonably good life or do without them and be ill.’ (Respondent 10, male, age 74)
‘I have a [type of valve] - the decision made because I didn’t want to take drugs.’ (Respondent 37, male, age 43).
‘I have young children & being incapacitated for any amount of time isn’t possible without a lot of support.’ (Respondent 150, female, age 40)
‘Postpone the operation is synonymous with live with a problem and this affects significantly life quality.’ (Respondent 11, doctor)
‘Most patients recognise and accept the need for regular monitoring, and therefore put up with the inconvenience.’ (Respondent 38, doctor)
Retaining an active and participatory lifestyle‘If I’d find myself confined to the house and not able to cycle, walk, garden etc I’d get very low.’ (Respondent 111, male, age 59)
‘Being physically active gives me joy and a sense of well-being.’ (Respondent 57, male, age 59)
‘I have a busy active life so don’t think it would be suitable for me (Respondent 102, female, age 47).
‘Important, because I enjoy the exercise classes I attend and I believe they help to keep me well, and able to join in local activities.’ (Respondent 05, female, age 73)
‘My idea of physical activity is different, but I still enjoy walking, swimming, yoga and I feel blessed to be able to do those things.’ (Respondent 159, female, age 53)
‘Anticoagulation has complications, needs a disciplined life and restricts you in your activities and traveling around.’ (Respondent 18, doctor)
‘Many patients are inactive which is detrimemental to their wellbeing, and we discuss this routinely, advising on regular exercise!’ (Respondent 71, doctor)