Table 6 Issues regarding IPOS completion identified in the cognitive debriefing phase

Q1. What have been your main problems or concerns over the past 7 days? (P)

What have been the patients’ main problems over the past 7 days? (S)

Open questions with three lines for answers

Good comprehension (14/15) of the question. Participants welcomed the term προβλήµατα and perceived it as a broader term than symptoms, which can include concerns and family issues.

…I think that ‘problems’ is the right word, because it does not refer only to symptoms, it can be other things, such as things that have to do with the family or the carer (S-3)

I was thinking of the patient as a patient, but also the family’s problems. All the problems in this household (S-2)

Yes, it is very simple/clear. For me is the fear of the disease (P-1)

You mean the 3 major issues because I have many, not just 3. It is the colostomy management, …, family pressure, financial issues (P-5)

A few participants suggested to include the phrase ‘that bothered you in particular’ to help respondents to prioritise their key problems.

Can you add the phrase: that they particularly bothered you, to make it clear that you want the ones at the top of list? (P-3)

No changes to staff version

What are the main problems or concerns that particularly bothered you over the past 7 days (P)

Remains an open question with three lines for answers

Q2. Bellow 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 (P)

Please tick one box that best describes how the patient has been affected by each of the following symptoms over the past 7 days (S)

Not at all, Slightly, Moderately, Severely, Overwhelmingly

Cannot assess (e.g., unconscious) (S)

Good comprehension (10/15). 4 participants found the question too long and wordy.

In order to answer this question, I had to read it three or four times, I somehow lost the meaning. I believe this is not the right way to express it, anyway, it is not easy to understand (S-7)

The question is too long… in the beginning…and we have said it is difficult to grasp its meaning (S-3)

Both patient (5/6) and HPs (5/9) participants revealed a confusion of the meaning of the question, as to whether it assessed severity or impact (how versus how much).

It asks about the grade of the following symptoms (P-3)

Here it talks about the intensity… How much it has affected the patient. I think this has to do with both the intensity but also how it might have changed their ability to function… not just the grade… It includes many parameters, not just the severity of the symptom (S-3,4)

To be honest, I have been carried away by some of the symptoms and considered more the intensity rather than the impact (P-7)

When talking about impact, I think it is a composite of many factors, such as severity, intensity, length of persistence, repetition pattern, influence on functionality. (S-3)

It is matter of grade (P-4)

All HP participants found answer options clear and grading sufficient, with the exemption of the example of the last one (i.e., unconscious/ αναίσθητος). The term unconscious was reported to have alternative meanings: being insensitive, or indifferent (3/9) or somebody under anaesthesia (1/9).

Unconscious does not really apply to me; it refers to operating theater (S-8)

I think that the word “unconscious”, in Greek culture may also have a different significance, meaning you are indifferent… (S-9)

A phrase that describes level of consciousness (4/9) or ability to communicate (3/9) was proposed. Overall consensus was on level of consciousness.

Compromised level of communication, for whatever reason, …, low level of communication(S-3)

confusion or confused, something like that that we use in our everyday practice (S-8)

Perhaps we could use loss of consciousness (S-8, S-7)

Patients found challenging the rating of symptoms when those fluctuated during the measured period. (See more on symptoms bellow)

Here is a list of symptoms that you may or may not have experienced. For each symptom, please choose the corresponding box (only one) that describes best how it affected you over the past 7 days (P)

Please choose the box (that describes better how each of the following symptoms affected the patient over the past 7 days (S)

Not at all (Καθόλου)

Slightly (ήπια)

Moderately (µέτρια)

Severely (σοβαρά-S,

πολύ-P)

Overwhelmingly (ανυπόφορα)

It cannot be assessed (e.g., reduced level of consciousness)

Δεν µπορεί να εκτιµηθεί (π.χ. απώλεια του επιπέδου συνείδησης)

Pain

Good comprehension by all participants

Some patients (3/6) found it hard to judge the severity of pain and how it affected them, as it fluctuated over the 3 or 7 days. They solved this problem by estimating a mean value over the three days.

Pain (Πόνος)

Shortness of breath

Good comprehension by all participants. A debate between the terms dyspnea and difficulty-in-breathing led to a consensus towards the latter term. The term difficulty in breathing (=Δυσκολία στην αναπνοή) was understood as a better description of dyspnoea regardless its cause (e.g., physical, psychological)

I prefer the difficulty in breathing as it describes the feeling of dyspnoea, however it might be experienced by the patients (e.g., due to disease progression, depression, panic attack (S-4)

… If refers to breathing, if it is unobstructive or not. For whatever reason…and whatever feeling it is expressed (S-3)

Difficulty in breathing might mean air is cut short (S-8)) the air is not enough (P-3) I cannot take a deep breath (P-4)

Difficulty in breathing (Δυσκολία στην αναπνοή)

Weakness or lack of energy

Good comprehension of the word weakness (=Αδυναµία) (15/15). Participants explained it as a term describing tiredness, and exhaustion.

When I say weakness, I can think of fatigue… I can think of exhaustion (P-1, P-3)

Thinking of patients, they usually say, I feel tired, hence it seems weakness has to do with feeling fatigued (S-6).

Weakness also refers to mental or spiritual fatigue, not being in the mood, feeling low (P-3)

There was a debate about the phrase lack of energy (= Έλλειψη ενέργειας/ ενεργητικότητας). Professionals favored it (8/9) and considered it as a synonym to weakness (S-3); or related to vigour (= preferred term in Greek: ενεργητικότητα) (S1, S3, S4, S7) and some connected it to activities performance (δραστηριότητες) (S-4, S-8))

Weakness is not enough; lack of energy refers to the activities the patients used to do etc. (S-8)

I thought of the activities the patient reports over the last few days… if he had to reduce his activities because he felt tired…(S-4)

Patients preferred the Greek term (ενέργεια) for energy (6/6) Lack of energy was then described as not feeling like doing anything, or not willing to leave the chair.

Lack of energy (ενέργεια) is broader than energy (ενεργητικότητα), I prefer the first one (P-1). What can I say, there are days I do not want to hear anyone (P-6)

I do not have energy means I feel like doing nothing, not feeling the need to move from the sofa, or going out (P-3).

Lack of energy means even if I want to go for a walk, I don’t feel like I can…, feeling weak or feeling low (P-2)

Weakness or lack of energy (Αδυναµία ή Έλλειψη ενέργειας)

Nausea (feeling like you are going to be sick)

Good comprehension by all participants and overall consensus (15/15). Participants welcomed the explanation in the brackets as a helpful description.

I like the explanation in the brackets. Maybe nausea is enough for staff, but for some patients the explanation might be useful (S-5).

Nausea (Ναυτία)

Feeling like you are going to be sick (Τάση για έµετο)

Vomiting

Good comprehension by all participants, overall consensus (15/15). Difficulties with the rating were reported, as some participants tried to rate the severity of the symptom, not its impact.

Vomiting (Έµετος)

Poor appetite

Good comprehension by all participants. The term poor appetite (=Μειωµένη όρεξη για φαγητό) was preferred to anorexia. As appetite might be connected to many things in Greece, the word ‘for food’ was agreed to be added, for clarity.

I don’t feel like eating anything (P-2)

Poor appetite (reduced appetite for food: Μειωµένη όρεξη για φαγητό)

Constipation

Good comprehension by all participants (15/15)

This is a common symptom that really affects patients, and they often mention it even when you don’t ask (S-8)

Constipation (Δυσκοιλιότητα)

Sore or dry mouth

Good comprehension and agreement to both terms by HPs (8/9). Terms considered to be inclusive of overall mouth problems from dry mouth to inflammation and infection. Yet, patients gave examples referring to dry mouth only (3/6)

I like the term ‘sore mouth’ as it can include many problems, such as ulcers inflammation, and stomatitis (S-8)

Sore mouth might include symptoms related to mucositis, ulcers, etc. (S-4)

For dry mouth… I need to always have a glass of water next to my bed, otherwise the suffering is unbearable(P-4)

My mouth and my tong are dead, so dry that I cannot even swallow my saliva (P-2)

My tong and my lips are so dry that I feel them numbed(P-5)

Sore or dry mouth (Ερεθισµένο ή ξηρό στόµα)

Drowsiness

The term was understood well by most participants (13/15). It was related to feeling sleepy and was measured against its impact on everyday life.

Patients describe drowsiness as feeling sleepy which affects their everyday life (S-2)

When they feel sleepy and cannot respond the activities of their daily life (S-4)

I have the opposite, insomnia stress and cannot sleep (P-2)

Drowsiness (Υπνηλία)

Poor mobility

Good comprehension and consensus on the term by all participants (15/15)

I like this as it makes clear that mobility is different from energy (P-5) For me it is difficulty with walking, ability to reach out for things (P-1).

Poor mobility (Περιορισµένη κινητικότητα)

Please list any other symptoms not mentioned above and tick one box to show how they have affected you over the past 7days. (P)

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 7 days (S)

Good comprehension and consensus achieved by all participants after some minor changes in the phrasing of a few words in the question. Both versions were suggested to use past tense. Patient version kept the ‘tick a box- only one’ whilst staff version agreed to ‘choose a box’.

To make the question concise, professionals suggested to replace the ‘any other’ with ‘additional’. (S-2)

Patients found the question useful as it gave the opportunity to add further symptoms but also break down symptoms reported above.

I wrote symptoms not mentioned above (P-3)

I wanted to be more specific with regards to poor mobility. It has to do with my left arm, so I added here(P-1)

Please list any other symptoms you had and not mentioned above and tick the box (only one) that describes better how they have affected you over the past 7 days. (P)

Please list any additional symptoms and choose a box to show how you think each of them has affected the patient over the past 7 days (S).

Q3. Over the past 7 days, have you been feeling anxious or worried about your illness or treatment? (P)

Over the past 7 days, has s/he been feeling anxious or worried about his/her illness or treatment? (S)

Not at all, occasionally, sometimes, most of the time, always

Cannot assess (e.g., unconscious)

Good comprehension, overall consensus by all participants.

Two HP respondents (S-4,6) wished anxiety was not restricted to disease or treatment only.

It somehow narrows the scope and often it is more than treatment and disease that patients feel anxiety (S-6) What if the patient is anxious about other issues, beyond the disease and treatment. Do we still score for it? (S-4)

The grade of response was discussed. The difference between occasionally and sometimes was found unclear to 3 HPs and 2 patients (5/15).

‘Occasionally’ was originally translated as ‘Περιστασιακά’ and changed to ‘λίγες φορές’, for staff version, in concordance with the patient version. ‘Always’ was originally translated as ‘πάντα’ and changed to ‘συνεχώς’ for both version. Cannot assess (e.g., unconscious) changed to e.g., ‘reduced level of consciousness’, following responses to Q2.

Over the past 7 days, have you been feeling (=νοιώθατε) anxious or worried about your illness or treatment? (P)

Over the past 7 days, has s/he been feeling (=ένοιωθε) anxious or worried about his/her illness or treatment? (S)

Not at all (Καθόλου) Occasionally (λίγες φορές) Sometimes (αρκετές φορές)

most of the time (τις περισσότερες φορές) (P, S)

always (P: πάντα, S: συνεχώς)

It cannot be assessed (e.g., reduced level of consciousness- ‘απώλεια επιπέδου συνείδησης’) (S)

Q4. Over the past 7 days, have any of your family or friends been anxious or worried about you? (P)

Over the past 7 days, have any or his/her family or friends been anxious or worried about the patient? (S)

Good comprehension by all participants. Variation in assessing anxiety of different members of family/ friends. Professionals argued of not having access to patient’ friends unless directly involved in their care (4/9).

Not sure the relevance of friends, unless involved in their care (S-9)

Cannot assess the friends’ network of the patient(S-2)

Also, hard to quantify for a group of people, especially if there is variation at anxiety levels (3/9). Patients could identify those important to them- not dilemma on who to consider (5/6).

… are we talking about the children, or the main carer? Who to consider?… children might be more sensitive and thus more anxious, comparing to a spouse. (S-6) Do you mean the nuclear family or the broader family here? (S-8)

Over the past 7 days, have any of your family or friends been anxious or worried about you? (P)

Over the past 7 days, have any or his/her family or friends been anxious or worried about the patient? (S)

Q5. Over the past 7 days, have you been feeling depressed? (P)

Over the past 7 days, do you think s/he felt depressed? (S)

Patients reinforced the chosen Greek terms for ‘feeling depressed’ (= Νιώθατε θλίψη) instead of the word ‘κατάθλιψη’. Different synonyms were discussed (λύπη, στεναχώρια) but the original term was perceived as conceptually broader, encompassing different dimensions (5/6). All professionals agreed to the term (9/9)

‘Sadness, mixed with stress shape the ‘feel depressed’; (P-3)

Feeling depressed might also include a sense of isolation and subsidence (P-2)

It is the feeling that compromises joy…and your tranquility (P-5)

…It is when you are sad, feeling in a tide place, feeling suppressed… the feeling of not having enough energy to cope (P-6)

No changes made.

Greek version: ‘Νιώθατε θλίψη;’ (P)

‘Νοµίζετε ότι ένιωθε ο/ή ασθενής θλίψη’; (S)

Q6. Over the past 7 days, have you felt at peace? (P)

Over the past 7 days, do you think s/he felt at peace? (S)

Always,

Most of the time

Sometimes

Occasionally

Not at all (P, S)

Cannot assess (e.g., unconscious) (S)

The social spiritual or emotional context of the Greek word peace (=ειρήνη) was discussed, and agreed to the meaning of tranquility/ serenity. (13/15) Two HP preferred the word ‘ειρηνικά’, but some patients highlighted its relevance to religion terminology and thus not relevant to all.

‘… when the priest wishes for peaceful ending of life… internal piece’ (P-5)

‘Feeling at peace is often used in church, not appropriate for everyone (S-3)

‘I prefer the inner serenity (ψυχική ηρεµία), it reflects better the inner state of peace, because being at peace might relate to the social context, peace with others.’ (P-3)

I like more the feeling calmness, internal serenity, quietness, tranquility, not so much feeling peacefully (P-6)

Over the past 7 days, have you felt inner serenity (Νιώθατε ψυχική ηρεµία)? (P)

Over the past 7 days, do you think s/h felt inner serenity (Νοµίζετε ότι ένοιωθε ψυχική ηρεµία)? (S)

Always (συνεχώς)

Most of the time (τις περισσότερες φορές) Sometimes (αρκετές φορές)

Occasionally (λίγες φορές)

Not at all (Καθόλου) (P, S)

It cannot be assessed (e.g., reduced level of consciousness- απώλεια του επιπέδου συνείδησης’) (S)

Q7. Over the past 7 days, have you been able to share how you are feeling with your family or friends? (S)

Over the past 7 days, has the patient being able to share how s/he is feeling with his/her family or friends as much as s/he wanted? (S)

Good comprehension by all participants and examples shared to illustrate the importance of the question. Participants expressed a difference of importance between family and friends. Some patients objected the reference of family and friends as of equal alternatives. (3/6)

‘First comes the family and then friends. Why using or?’ (P-4)

‘Family and friends are not the same thing. I wouldn’t put them in the same question’ (P-2)

‘… how about phrasing it: “share your feelings with your family and maybe your friends”, to give priority to the family’ (P-3)

Over the past 7 days, have you been able to share how you are feeling with your family or friends? (S)

Over the past 7 days, has the patient being able to share how s/he is feeling with his/her family or friends as much as s/he wanted? (S)

Q8. Over the past 7 days, have you had as much information as you wanted? (P)

Over the past 7 days, has the patient had as much information as s/he wanted? (S)

The term ‘information’ (= πληροφόρηση) was debated in comparison to term ‘briefing/ updating’ (= ενηµέρωση). Consensus reached for the term ‘ενηµέρωση’, given that it is the common term used in clinical practice. (9/15)

‘I think updating(ενηµέρωση) is better than information’ (πληροφόρηση) (P-2) … I agree with this, maybe it is. (S-8)

‘We usually invite patients and families for ‘ενηµέρωση’, not ‘πληροφόρηση’. We don’t use this term in the clinic.’ (S-3)

Clarity was requested with regards to being informed ‘by whom (6/15)’ and ‘about what’ (5/15). Patients included families as being information givers (4/6).

‘ As for information, I thought of medical issues, but also more general info such as the team, the service, who we are, psychosocial resources, etc…’(S-9)

‘When we say information, do we mean by the doctors or also our family? (P-1) Correct, information comes from your social environment as well (P-4).

Patient participants (3/6) found it difficult to rate satisfaction with information, as information level may vary according to type of information.

‘Let’s say, I put occasionally because I was happy with treatment information, but not so with illness progress, or other matters.’ (S-9) ‘I agree, I did not have enough info re medical issues by my doctor, but I was happy with the social worker about psychosocial matters’ (S-4)

Over the past 7 days, have you had as much information as you wanted (Τις τελευταίες 7 ηµέρες είχατε τόση ενηµέρωση όση θα θέλατε? (P)

Over the past 7 days, has the patient had as much information as s/he wanted? (Είχε ο ασθενής τόση ενηµέρωση όση θα ήθελε;) (S)

Q9. Over the past 7 days, have any practical problems resulting from your illness been addressed? (Such as financial or personal) (P)

Over the past 7 days, have any practical problems resulting from his/her illness been addressed? (Such as financial or personal) (S)

Problems addressed/ No problems (P, S)

Problems mostly addressed (P, S)

Problems partly addressed (P, S)

Problems hardly addressed (P, S)

Problems not addressed (P, S)

Cannot assess (e.g., unconscious)

The proposed term for problems was debated and agreed to change from ‘ζητήµατα (= matters) to ‘προβλήµατα’. Most participants thought it was clearer and corresponded better with the answer options (10/15). The offered example in brackets was valued for clarity by all. The responses formulation and grading seem to have some issues: The first response was found by some people confusing, given that it incorporated two different responses. The recommended that πλήρως (= fully) καθόλου (= not at all) to be included in the grading of the answer options.

Debate about the grading of the response. There was a consensus that the first option included two answers as one option. Participants thought this might be confusing and suggested alternative expressions that were more descriptive (8/15). Some words changed in the grading, to make the grade of the options more distinctive. Some variation between staff and patient options was recorded.

‘The problems were fully addressed’ / ‘there were problems and were resolved’ (S-1,8,4) ‘Problems were addressed’ (P-5,3,6)

‘… no problems’ (S-1,8,4); ‘there were no problems’ (S-1,2,4,7; P-2,5,6)

Over the past 7 days, have any practical problems (=προβλήµατα) resulting from your illness (νόσο σας) been addressed (such as financial or personal)? (P)

Over the past 7 days, have any practical problems (=προβλήµατα) resulting from his/her illness (=την νόσο του/της) been addressed? (Such as financial or personal) (S)

Problems were addressed/ There were no problems (Τα προβλήµατα αντιµετωπίστηκαν/ δεν υπήρχαν προβλήµατα) (P)

Problems were fully addressed / there were no problems. (Τα προβλήµατα αντιµετωπίστηκαν πλήρως / δεν υπήρχαν προβλήµατα) (S)

Problems were largely (=σε µεγάλο βαθµό) addressed (P, S)

Problems partly (= µερικώς) addressed (P, S)

Problems hardly (=µόλις που) addressed (P, S)

Problems not addressed (at all = καθόλου) (S)

Cannot assess (e.g., reduced level of consciousness) (S)

Q10: How did you complete this questionnaire (P)

On my own

With help from a friend or relative

With help of from a member of staff

No problems or concerns with Q10

How did you complete this questionnaire (P)

On my own

With help from a friend or relative

With help of from a member of staff