Table 4 Results from cognitive group interviews with staff (n = 7)

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

Very good comprehension.

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

0 Not at all

1 Slightly

2 Moderately

3 Severely

4 Over-whelmingly

Cannot assess (e.g. unconscious)

Pain

Shortness of breath

Weakness or lack of energy

Nausea (feeling like you are going to be sick)

Vomiting (being sick)

Poor appetite

Constipation

Sore or dry mouth

Drowsiness

Poor mobility

In overall good comprehension. It was pointed out that the scale item- cannot assess (e.g. patient unconscious) is translated to Estonian “ei saa hinnata (nt patsient ei ole teadvusel)” which in Estonian may lead to an opinion that this box should be marked only when it is not possible to assess the status due to patient condition (e.g. patient unconscious). The question was raised if this box can still be marked if the specialist is not able to answer due to limited information (patient inadequate) or limited feedback from the patient. It was discussed and proposed to add additional word (“ei oska”) to Estonian term which would make it clearer “ei saa/ei oska hinnata (nt patsient ei ole teadvusel)”. Verb “can” is used in English in much broader sense compared to verb “saama” in Estonian. Some team members also proposed to add additional word “inadequate” to “unconscious”. Very good comprehension of listed symptoms.

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 week.

Very good comprehension.

Over the past week:

Very good comprehension.

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

0 Not at all

1 Occasionally

2 Sometimes

3 Most of the time

4 Always

Cannot assess (e.g. unconscious)

Very good comprehension.

One participant asked if this question should be asked from the patient, as asking may cause additional anxiety and impression that something is wrong (“mostly patients are worried, if no worry at all then patient might be inadequate”; “I would prefer sometimes not too ask if patient is anxious by the nature”).

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

0 Not at all

1 Occasionally

2 Sometimes

3 Most of the time

4 Always

Cannot assess (e.g. unconscious)

Very good comprehension.

Q5. Do you think s/he felt depressed?

0 Not at all

1 Occasionally

2 Sometimes

3 Most of the time

4 Always

Cannot assess (e.g. unconscious)

Good comprehension.

One of staff member has asked additional question who should assess it.

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

0 Always

1 Most of the time

2 Sometimes

3 Occasionally

4 Not at all

Cannot assess (e.g. unconscious)

Very good comprehension of the question (“I feel that I’m able to answer if I have been in contact with patient”; “Question is clear, but sometimes it might be complicated to assess it in clinical setting”; It might be difficult to answer).

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?

0 Always

1 Most of the time

2 Sometimes

3 Occasionally

4 Not at all

Cannot assess (e.g. unconscious)

Very good comprehension.

(“This is very good question”; “It is important to map how patient is communicating with family”; Patients sometimes do not want to share their feelings with friends and family”).

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

0 Always

1 Most of the time

2 Sometimes

3 Occasionally

4 Not at all

Cannot assess (e.g. unconscious)

Good comprehension of the question. Additional discussion and questions raised what information exactly should be asked and mapped. (“What information is meant”; “Sometimes patients are lacking information relevant for everyday wellbeing e.g. they do not know where cafeteria is located in the hospital“; To assess patient information needs over the time could here be a box for comments”; I may not remember what were the information needs”).

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

0 Problems addressed/ No problems

1 Problems mostly addressed

2 Problems partly addressed

3 Problems hardly addressed

4 Problems not addressed

Cannot assess (e.g. unconscious)

Good comprehension of the question.

Additional question by whom the practical questions should be addressed was raised. A few interviewees pointed out that Scale items 2 “Problems partly addressed” in Estonian “Probleemidega on osaliselt tegeletud” and 3 “Problems hardly addressed”, in Estonian “Probleemidega on vähe tegeletud” are very similar and it might be complicated to distinguish the difference between scale items 2 and 3.

(“There are too many options”; It would be clearer if there is just 3 or 4 options instead of 5″; “Difficult to assess, patients have different priorities“; “Again, comment box would be good to map the practical problems”; “It would be clearer if under personal is also mentioned day-to-day coping”).