Table 2 Issues regarding IPOS questions identified in cognitive interviews with patients (n = 13), and items revised

Q1. What have been your main problems or concerns over the past 3 days?

Good comprehension overall. All patients except one specified 1–3 main problems or concerns.

No

Q2. Below is a list of symptoms, which you may or may not have experienced. For each symptom, please tick one box that best describes how it has affected you over the past 3 days.

One patient had to read the question several times (1/6). A revision with the first sentence removed was tested (n = 9), and comprehension was then good (9/9). Some patients (3/13) did not consider three days to be long enough; one stated that the past week would have been a better time window.

Yes

Pain

Some patients (2/13) found it hard to judge the severity of pain and how it affected them, as this symptom fluctuated over the three days. They solved this problem by estimating a mean value over the three days.

No

Shortness of breath

Good comprehension overall (12/13). One thought the Swedish term^a for breathlessness was a difficult word.

Yes

Weakness or lack of energy

Overall good comprehension except by one patient who did not understand the difference between these two terms.

No

Nausea (feeling like you are going to be sick)

Good comprehension by all patients.

No

Vomiting (being sick)

Good comprehension by all patients.

No

Poor appetite

Good comprehension by all patients. Judging the severity was difficult for one patient, as she was tube fed.

No

Constipation

Good comprehension by all patients.

No

Sore or dry mouth

Good comprehension overall (12/13). One patient considered that it was not possible to have pain in the mouth.

No

Drowsiness

Good comprehension overall (11/13). One patient did not understand what drowsiness was, and some thought it also could be something positive.

No

Poor mobility

Good comprehension by all patients.

No

Please list any other symptoms not mentioned above, and tick one box to show how they have affected you over the past 3 days.

One patient got stuck on this instruction, and had to read it several times in order to understand it. A revision was tested (n = 9), and showed good comprehension (9/9).

Yes

Over the past 3 days:

Q3. Have you been feeling anxious or worried about your illness or treatment?

Good comprehension by all patients.

No

Q4. Have any of your family or friends been anxious or worried about you?

Good comprehension (6/6). However, the term for friends is not commonly used in the Swedish care context. The Swedish term for next-of-kin was tested as a replacement (n = 7), and showed good comprehension. This term includes not only relatives (e.g. sisters, first cousins) but also close friends (e.g. neighbours).

Yes

Q5. Have you been feeling depressed?

Some patients (4/13) interpreted the Swedish term for depressed as a diagnosis, and so the Swedish term for gloomy was tested as a replacement (n = 11). All patients either preferred the Swedish term for gloomy or had no preference between the two terms.

Yes

Q6. Have you felt at peace?

Some patients (2/13) understood the question with the Swedish term for at peace (i.e. satisfied) as asking whether they were satisfied with their care or their achievements, and not the intended meaning of spiritual wellbeing. Replacement terms were tested. Some patients (4/13) connected the Swedish term for inner peace with being religious. The Swedish term for calmness and stillness within themselves was the one most patients (7/13) used when they talked about inner peace or matters related to spiritual wellbeing, such as accepting their situation.

Yes

Q7. Have you been able to share how you are feeling with your family or friends as much as you wanted?

Some patients (3/13) misunderstood the question as asking whether they wanted to share how they were feeling with family or friends, and one had difficulty understanding the Swedish term for being able to share. One patient said that she did not share how she felt with her friends. The term for next-of-kin was tested as a replacement (see question 4).

Yes

Q8. Have you had as much information as you wanted?

Some patients (5/13) wondered what information this question referred to, and from whom. Others understood that the question referred to information about their disease, their situation, or the care. One patient did not answer the question.

Yes

Q9. Have any practical problems resulting from your illness been addressed? (such as financial or personal)

Most of the patients (12/13) spent time reading and rereading this question, and had some trouble understanding what practical problems were referred to. The example in parentheses was helpful for some, but seemed to be more confusing for others.

Yes

Q10. How did you complete this questionnaire?

Good comprehension by all patients.

No