Table 1.

Suppinfo: patient interview guide.

Themes	Guiding questions
Opening question	Can you tell me about any ways your life has been affected by your condition?
Main interview questions	Can you tell me how living with your condition makes you feel? Can you tell me what things make you feel like this? Can you give examples? Do your activities change as a result of feeling like this? If so, how? How do you cope with feeling like this? Who do you talk to about feeling like this? Do you use any support services for example, websites/counselling to help you with your feelings? If so, what do you use and why? Does your condition affect your social life? Can you think of any social activities that you used to do which you can’t now as a result of your condition? What effect does your condition have on your day-to-day activities? /How does your disease affect your daily life? Has your disease had an impact on your working life? If so, how? Does your condition affect your housework? If so, how? What effect does your condition have on your friendships with others, both friends and strangers? Has your condition affected any relationships within your family? If so, how? Do you buy anything special or different as a result of your condition? Can you explain what and why? Do you experience any financial difficulties associated with your condition? What are the causes of these? Has your condition affected going on holiday at all? If so, how? Does your condition affect your sleep? If so, why? Has your condition affect your health in other ways? If so, how? Have you changed what you eat at all? If so, how? Do you have any support from people or groups? Can you tell me more? Do you feel fatigued or tired? Can you tell me more? How does this affect you? Has your sex life been affected at all? If so, how? Can you think of any other ways that your condition has affected your life?
Other questions	How do you feel you are coping with your disease? Have you experienced any symptoms from your disease? If so, how have they affected your QoL? Have you experienced any side-effects from your treatment? If so, how have they affected your QoL? How do you feel in yourself? Do you worry about anything? If so, could you expand on this? (e.g. future concerns) Do you have any concerns regarding your medication/treatment? If so, what are they? . . . Could you elaborate? How do you manage your medication? Have you experienced any difficulty with your treatment/medication? Do you get support from friends and family? If so, how have they helped? What effect has this had on your QoL? Do you feel your needs as a patient are met adequately? Could you explain? Have you sought any other services outside of family, friends or the hospital? Have you experienced any distress as a result of your condition? How would you describe the emotions you feel living with your disease?
Closure	Is there anything else you can think of that you haven’t told me?

QoL, quality of life.