Table 2 Summary of patient interviews

1. I can see that you experienced one or more additional symptoms/problems during the past week. Is this correct? Can you tell me about it/them?

Described additional symptoms or problems n = 110 (68.3%)

48 (60.0%)

“Burning inside the mouth is causing more or less significant discomfort to eat or drink” (P103)

“My incontinence is embarrassing and forcing me to avoid normal activities” (P115)

“Because of my sore mouth, I lost the taste” (P136)

62 (76.5%)

“I experienced dizziness in the last 2 months and can’t go out of the house” (P7)

“I have trouble controlling urine. At first it limited me a lot. Then they recommended incontinence pads” (P9)

“I can no longer walk long distances or carry things” (P53)

2. Do you think that this/these problem/s is/are related to your disease or treatment?

Answered yes, n = 122 (75.8%)

61 (76.3%)

“I think it is due to Avastin during the 3 days treatment” (P102)

“My weight loss is due to illness and treatment” (P142)

“Both additional symptoms are associated with chemotherapy” (P155)

61 (75.3%)

“Tingling only during chemo then it lasts a few days then disappears” (P63)

“I lost the taste because of the therapy” (P28)

“I heard from another doctor that there is a medicine which helps for being nauseous as a side effect of immunotherapy, wish I heard this earlier” (P51)

3. Did you have difficulty in replying to this question?

Answered yes, n = 3 (1.9%)

2 (2.5%)

“I have difficulties talking about my health problems” (P139)

“I don’t like questionnaires like this” (P149)

1 (1.2%)

“I don’t know what to do with WISP” (P52)

4. Do you think this question is annoying?

Answered yes, n = 1 (0.6%)

1 (1.3%)

“Questionnaires are unnecessary” (P128)

0 (0%)

5. Do you find this question is confusing?

Answered yes, n = 5 (3.1%)

0 (0%)

5 (6.2%)

“I much prefer closed questions” (P1)

“The item is not clear about the type of symptoms it is asking about (physical, psychological, emotional, or other symptoms)” (P3)

“Unclear what type of symptoms/problems the question means, physical, social, emotional etc.?” (P47)

6. Do you find this question upsetting?

Answered yes, n = 2 (1.2%)

1 (1.3%)

“It's upsetting to talk about pain caused by therapy” (P137)

1 (1.2%)

“A little bit, going over and thinking about symptoms/problems is upsetting” (P57)

7. Do you have other comments about this question (e.g., on its usefulness or relevance for reporting symptoms, etc.)?

Answered yes, n = 27 (16.8%)

12 (15.0%)

“I found it more difficult to formulate additional symptoms than responding to the ones already written” (P107)

“There is too little attention on the theme sexuality, should be incorporated in the questionnaire as this is a big part of someone's quality of life” (P116)

“I like to answer questionnaires and be aware of symptoms” (P126)

“I liked this question to talk about my symptom load” (P169)

15 (18.5%)

“It’s better to add an explanatory example (e.g., physical, psychological, emotional, etc.)” (P4)

“In the questionnaires you have the option yes/no, but sometimes is nice to have space to include "something else" (P16)

“I am thankful for this interview and talk about my symptoms” (P52)

“Why was numbness not covered by the EORTC questionnaire?” (P54)

8. How would you paraphrase this question? How would you ask it?

Patients who paraphrased WISP, n = 36 (22.4%)

15 (18.8%)

“Have you had other symptoms or problems?” (P82)

“Please list any symptoms other than those listed above” (P112)

“Is there something else you would like to report?” (P120)

21 (25.9%)

“Have you had any other symptoms (physical, psychological, emotional, etc.) that were not mentioned above? (P3)

“Have you other distressing symptoms?” (P43)

“Have you had other problems/symptoms in your daily life?” (P48)