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Table 5 Results from cognitive interviews with patients (n = 11)

From: Translation and cultural adaptation of IPOS (integrated palliative care outcome scale) in Estonia

Original English IPOS question/item Patients comprehension and judgment of the pre-final IPOS in Estonian
Q1. What have been your main problems or concerns over the past week? Very good comprehension. The question was well received and understood. (“Question is simple and logical, I understand it well”). All patients responded with personal problems (“my main concern has been how to avoid coronavirus”; “how to cope financially”) as well as health-related problems (“weakness”, “nausea”; “vomiting”). Some patients responded that there were no problems at all.
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 week.
0 Not at all
1 Slightly
2 Moderately
3 Severely
4 Over-whelmingly
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
Good comprehension.1/11 patient suggested adding a word average (how it has affected you in average over the week) as she felt that is difficult to assess the pain as it constantly changes during the day/week (“Pain comes and goes, no one is suffering pain while in the hospital …”). Very good comprehension of listed symptoms.
Please list any other symptoms not mentioned above, and tick one box to show how they have affected you over the past week Very good comprehension by all patients.
Over the past week: Very good comprehension.
Q3. Have you been feeling anxious or worried about your illness or treatment?
0 Not at all
1 Occasionally
2 Sometimes
3 Most of the time
4 Always
Good comprehension. 1/11 patients felt that this question contains two questions (illness and treatment) and would like to differentiate the answers (“I’m happy with my treatment, and I fully trust my doctor, but the disease is something I cannot control, and it makes me anxious”).
Very good comprehension of scale items.
Q4. Have any of your family or friends been anxious or worried about you?
0 Not at all
1 Occasionally
2 Sometimes
3 Most of the time
4 Always
Very good comprehension. All patients had a very good understanding of the question (“I understand the question well”; “Accurate wording, I understand it”). Very good comprehension of scale items.
Q5. Have you been feeling depressed?
0 Not at all
1 Occasionally
2 Sometimes
3 Most of the time
4 Always
Very good comprehension by all patients (“I would not wish to say it somehow differently”; “Correct and relevant question”; “I understand it”). Very good comprehension of scale items.
Q6. Have you felt at peace?
0 Always
1 Most of the time
2 Sometimes
3 Occasionally
4 Not at all
Good comprehension. The question was found inappropriate by one patient (“What is this? I do not want to answer. There is no need for inner peace- logical thinking is needed”). 3/11 patients admitted that question is a little bit unusual for them, but they understand what is meant by this question and are able to answer (“I have found a balance between my disease and everyday life”; “I feel that I’m calm, goes as it goes, worrying does not help”; “This is a good feeling, “I feel it when I’m in nature”). Very good comprehension of scale items.
Q7. Have you been able to share how you are feeling with your family or friends as much as you wanted?
0 Always
1 Most of the time
2 Sometimes
3 Occasionally
4 Not at all
Good comprehension by all patients. 1/11patient mentioned that question is coinciding with question 4 (“I feel this question is similar to Q4. It is about friends and family. My friends and family have been worrying about me and I have talked to them”). Very good comprehension of scale items.
Q8. Have you had as much information as you wanted?
0 Always
1 Most of the time
2 Sometimes
3 Occasionally
4 Not at all
4/11 patient asked what kind of information is meant by the question (e.g. disease, treatment, nutrition etc.) and considered question too general (“What kind of information is meant here”; “Information from what source”; “If here is meant information about the disease and /or treatment then clarification could be in brackets”; “Question is too general and wide-ranging, could be specified”). Very good comprehension of scale items.
Q9. Have any practical problems resulting from your 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
2/11 patients felt that question is not easy to comprehend; they had to read it twice and asked additional questions before answering (“Could you please clarify”; “What is meant here”), but did not suggest to re-sentence it. 2/11 patients pointed out that time window (week/3 days) is too short for assessment whether practical problems are addressed or not (“Should I answer thinking about the last week?”; “There have been some problems and they were addressed, but earlier”).
Q10. How did you complete this questionnaire?
On my own
With help from a friend or relative
With help from a member of staff
Very good comprehension by all patients. Very good comprehension of scale items.
If you are worried about any of the issues raised on this questionnaire then please speak to your doctor or nurse Very good comprehension by all patients.
  1. Source: author, except the Original IPOS question/item (Palliative care Outcome Scale (POS). https://pos-pal.org/maix/)