Table 3 Issues regarding IPOS questions identified in cognitive interviews with staff (n = 15), and items revised

Q1. What have been the patient’s main problems or concerns over the past 3 days?

Good comprehension by all staff.

No

Q2. Please tick one box that best describes how the patient has been affected by each of the following symptoms over the past 3 days?

Some staff (3/15) considered 3 days too short, and one (1/15) considered it too long. Some (2/15) thought this timescale was best for first-time visits and in end-of-life care.

No

Pain

Good comprehension by all staff. Judging the severity of pain and how this affected the patient was difficult for some staff (2/15), as it varied over time.

No

Shortness of breath

Good comprehension overall (14/15). One staff member suggested using the Swedish term^afor shortness of breath instead of the Swedish term for breathlessness.

No

Weakness or lack of energy

One staff member interpreted the Swedish term for weakness or lack of energy as meaning lack of nutrition. The Swedish term for feebleness was tested as a replacement (9/15), and found to be associated with low general condition.

No

Nausea (feeling like you are going to be sick)

Good comprehension by all staff.

No

Vomiting (being sick)

Good comprehension by all staff.

No

Poor appetite

Good comprehension by all staff.

No

Constipation

Good comprehension by all staff.

No

Sore or dry mouth

Good comprehension by all staff. One staff member thought that mucus in the oral cavity was not included in this symptom, but had no suggestions for amendments.

No

Drowsiness

Some staff interpreted this as referring to the patient being asleep (3/15), or the patient falling asleep due to being affected by drugs (3/15). One felt that it was difficult to distinguish between drowsiness and weakness or lack of energy.

No

Poor mobility

Good comprehension by all staff.

No

Please list any other symptoms and tick one box to show how you feel each of these symptoms has affected the patient over the past 3 days.

One staff member found the layout confusing in that the instruction text disrupted the row of text with the answer options. A revision was tested (n = 11) with good comprehension (11/11).

Yes

Over the past 3 days:

Q3. Has s/he been feeling worried about his/her illness or treatment?

Good comprehension overall (14/15). One staff member was unsure what the question referred to. A gender-neutral Swedish pronoun (equivalent to singular “they”) was tested as a replacement for he/she, but none of the staff found this preferable.

No

Q4. Have any of his/her family or friends been anxious or worried about the patient?

Good comprehension by all staff. The Swedish term for next-of-kin was tested as a replacement for the Swedish for family or friends (n = 2). The term for next-of-kin was interpreted as meaning a family member, a close friend, a neighbour, or even, a pet.

Yes

Q5. Do you think s/he felt depressed?

The Swedish term for gloomy was tested as a replacement for the Swedish term for depressed (n = 15), and almost all staff (12/15) preferred the term for gloomy, as it was considered to be more inclusive and not associated with a diagnosis. Some staff (2/15) thought it was not clear who the question was referring to.

Yes

Q6. Do you think s/he has felt at peace?

Some staff (n = 2/15) interpreted the question with the Swedish term for at peace (i.e. satisfied) as mainly asking if the patient was satisfied with the care and their encounter with the staff. Replacement terms were tested. The Swedish term for inner peace was interpreted by some staff (3/15) as being associated with death and end of life, and by others (2/15) as having a religious connection.

Yes

Q7. Has the patient been able to share how s/he is feeling with his/her family or friends as much as s/he wanted?

Some staff (5/15) thought the question was unclear. Three interpreted the question as asking if the patient had the ability to talk with someone (e.g. the ability to make a phone call to someone). The Swedish term for being able was problematic. The term for next-of-kin was tested (n = 2) as a replacement for family or friends, and (2/2) was interpreted as meaning a family member or a close friend.

Yes

Q8. Has the patient had as much information as s/he wanted?

Good comprehension overall (14/15). One staff member initially had difficulty understanding what kind of information the question was about, but after a short while interpreted it as a wide question.

No

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

Several staff (6/15) perceived the Swedish term for addressed (i.e. met) as being difficult in a question about practical problems, as it does not imply any practical help. Some (3/15) thought that the text in the parentheses was confusing and restrictive.

Yes