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Table 3 Overview of signs and symptoms experienced by patients prior to treatment

From: Patients’ experience of recurrent/metastatic head and neck squamous cell carcinoma and their perspective on the EORTC QLQ-C30 and QLQ-H&N35 questionnaires: a qualitative study

Symptom Reported Example quote
S P Total
Lumps; head/neck 6   6 “Basically when I was first diagnosed I had a lump on my neck, on my right hand side of my neck. I noticed it for maybe two months, it did not bother me, did not hurt.” (01–06-M-57)
Difficulty/difference in swallowing 3   3 “I first had a… noticed a difference in my swallow... it was something that was different.” (01–04-M-59)
Pain 1 1 2 ”.. my mouth it would hurt and I knew there was something wrong.” (01–07-F-66)
Swollen lymph nodes (neck) 2   2 • “…nothing else other than the visible swelling of the lymph nodes and no pain, nothing else.” (01–03-M-55)
Tongue ulcer 1   1 “Initially I had a sore on my tongue that didn’t heal so I was sent to an oral surgeon and then an ear, nose and throat doctor.” (01–14-F-61)
Weight loss   2 2 “I started losing weight but not a lot at that time... I’m watching my weight go down and going okay but it wasn’t going down that much.” (01–07-F-66)
Change in voice   1 1 “That would be going back to like a raspy throat like what I had prior to being diagnosed, I had this… It would seem like my mouth was raspy and noticeably kind of different pitched.” (01–09-M-66)
Cough 1   1 • “I started to get a little more noticeable that I kept clearing my throat and coughing a little bit and so I decided to go to the doctor’s thinking maybe there was an infection or something of that nature.” (01–09-M-66)
Dry/peeling skin on the neck   1 1 “It felt like when you go swimming and your skin dries out, that’s how my neck was feeling, every two or three days or something like that.” (01–10-M-35)
Eating less   1 1 “I told him I used to be somewhat hungry all three times of the day, but it’s shifted now to only two times of the day.” (01–10-M-35)
Hearing problems 1   1 “I was having hearing problems…so I went to an ENT. He ran some tests on me and then he said we have a problem, we’re going to drill up and do a biopsy, and that’s when they found I have a nasopharynx tumour.” (01–13-F-62)
Impact on range of movement   1 1 “So my hands were throwing to a certain direction, but my eyes or my face wouldn’t turn in that direction, just because of the neck drying out, slowing up, stiffen up.” (01–10-M-35)
Tiredness   1 1 “I said I felt like I was getting enough sleep, but I still feel a little tired.” (01–10-M-35)
  1. Abbreviations: P reported when prompted, S reported spontaneously