Table 5 Examples to illustrate the extent to which questions from melanoma-specific HRQoL questionnaires correlate to aspects identified by patients and carers as important to their HRQoL, based on content analysis of survey responses
Questionnaire | Question | Relevance to patient population | Difference in wording | Example of patient response |
|---|---|---|---|---|
EORTC QLQ-MEL38 | Have you felt able to carry on with things as normal? | Relevant | Wording similar | ‘Wish to continue life as before.’ |
‘Ability to life my life as normal as possible.’ | ||||
EORTC QLQ-MEL38 | Have you felt confident that a psychological support service would be available if you needed it? | Relevant | Wording similar | ‘Care and mental support (professionals and personal network).’ |
‘Piece of mind that help is just at the end of a phone.’ | ||||
EORTC QLQ-MEL38 | Have you received realistic and reliable information about the extent (spread) of your disease? | Relevant | Wording may differ | ‘More facts and less fantasy. I could need statistics and knowledge.’ |
‘Not being treated like a passive idiotic patient but being informed according to my intellectual and emotional needs.’ | ||||
EORTC QLQ-MEL38 | Have you had problem with pain at or near your melanoma site? | Relevant | Wording may differ | ‘Worry and fears about future pain and mortality.’ |
‘Being able to live without pains.’ | ||||
EORTC QLQ-MEL38 | Have you been given enough time to think about the treatment options available to you? | Less relevant | Wording may differ | ‘Having treatment options explained and discussed with me.’ |
‘Up to date knowledge of available treatments.’ | ||||
EORTC QLQ-MEL38 | Have you had swelling near your melanoma site? | Less relevant | NA | NA |
EORTC QLQ-MEL38 | Have you felt able to accept that melanoma is a serious condition? | Less relevant | Wording may differ | ‘Understanding how hard it is to live with cancer (friends, relatives and work).’ |
‘Doctors who don’t take your worries seriously.’ | ||||
FACT-M | I get emotional support from my family | Relevant | Wording similar | ‘Being surrounded by people who support you through every step of the treatment.’ |
‘Family and friends support.’ | ||||
FACT-M | I worry that my condition will get worse | Relevant | Wording similar | ‘Worry every time it I have to go for my liver scan.‘ |
‘To be free from the constant worry and stress about mets.’ | ||||
FACT-M | I have a lack of energy | Relevant | Wording may differ | ‘Have the energy to play with my children not be impatient because of fatigue.’ |
‘Being able to exercise fully.’ | ||||
FACT-M | I am bothered by side effects of treatment | Relevant | Wording may differ | ‘I’m very anxious about potential side-effects from treatment.’ |
‘Being able to control drug side-effects.’ | ||||
FACT-M | I have good range of movement in my arm or leg | Less relevant | NA | NA |