Background
Materials and methods
Development of the RAID score
Current study: content validity
Focus group discussions
1. Could you introduce yourself and tell us how long ago rheumatoid arthritis (RA) was diagnosed? |
2. If you think of all aspects of your life RA had influence on, what is the first thing that pops up in your mind? |
Introduction of RAID score by LHvT to the participants: |
Recently, a group of people in Europe developed a questionnaire that measures the impact of RA on the patient's life on various health topics. Before a questionnaire can be used in daily practice or research, it must first be examined whether the questionnaire works properly and is reliable. That is why we are here today. The purpose of this meeting is to investigate whether you think that this questionnaire is complete, or if you miss domains/subjects in this questionnaire. In response to a question I will ask you, you can discuss and debate your answer with each other. In the meantime I will keep an eye on the equal input of everyone. The entire meeting is recorded on tape that we will analyze later. After about 45 minutes we will have a break of 15 minutes. The persons who developed the list found that the questionnaire had to remain short. Therefore there are seven topics included in this questionnaire, as you can see on the paper version we just provided you with. The topics include pain, problems with daily functioning, fatigue, sleep, physical well-being, emotional well-being and handling your disease. |
3. What do you think of these topics? |
4. Are these seven topics the most relevant to assess the impact of RA on your life? |
Second introduction of LHvT after the break: |
In the second part of this meeting, we would like to evaluate the questions and how they are formulated to see if everything is understandable and clear to you. |
5. Evaluation of all questions separately by asking if all questions were clearly defined and understandable. |
6. Today, I wanted to gain insight into all the domains in which RA had impact on in your life. Have I forgotten to ask you something that relates to this subject? Is there something you would like to say if you did not have the opportunity during the discussions? Would you like to add something to the previous discussions? |
Study sample focus group discussions
Data collection
Data analyses
World Health Organization International Classification of Functioning, Disability and Health core set for RA comparison
Results
Focus group discussions
Quote number | Quotes |
---|---|
Performing or maintaining a job | |
1 | P1.5: Almost 4 years ago I got acute and complete RA manifestations in almost all of my limbs, symmetrical. Everything fell apart. I use the normal ‘MTX misery’ and I’m greatly improved. I have a very positive look on everything. But my whole worldwide career was over and out in one stroke. |
2 | P1.7: You will not be cured. You can say goodbye to that. But you can adapt to what you ARE able to do. You don’t have to look at what you can’t do. |
P1.2: That kept me at work for 20 years. | |
P1.7: They threw me out of my job because I visited the doctor too often. | |
3 | P2.3: Yes, at a certain point I had to decide that I would step back from my company because I physically couldn’t handle it anymore. But I kept at it long enough to get the business on its feet. |
P2.2: And that’s pretty difficult, when you’ve started it yourself, such a business. | |
P2.3: You bet. | |
P2.2: So you’re completely out of it? | |
P2.3: Yes, in the end I was declared work disabled, but the company is still running and I’m the nicest volunteer there. | |
4 | P3.4: I’ve had arthritis for the last 18 years and especially the last 5 years it has had enormous impact. It went pretty well for quite a long time. The first year was really bad, I was on sick leave the whole year. Then, after starting with medication, actually, I started building it up again slowly, and up to 5 years ago it was sort of stable. And now it’s so bad, especially the last half year, that sometimes I think I’m just going to let everything drop and quit. It might not look like that today, but that’s the way it is… |
P3.2: It varies from day to day. | |
P3.4: Yes, yes, so actually I’ve now been declared fully disabled for work. | |
Coping with the disease | |
5 | P2.1: The limitations are a constant search for what your limits are, I find that very difficult. And I’m also finding out that even after all those years, I don’t really know the balance, because I don’t know. The moment I feel up to it, I go all the way and then a few days later you get a relapse, so that is bothersome. Walking is hard, you have pain, fatigue. So there is always a sort of constant considerations what to do. Sometimes you get a flare if you’ve gone too far. So you’re constantly making do and I find that very hard. |
6 | P2.5: Sometimes it’s really weird, because then you want to pick up a pen and you can’t for some reason… your hand locks down and you can’t get the pen into your hand. And sometimes I can suddenly have a day where my leg really hurts, but not the joints, just the muscle, and it lasts for a day and then it is gone and I really drag my feet and stumble around for a day and the next day it is gone. |
7 | P2.3: And then somebody says: are you coming sailing this weekend. And I say: yes! And then the first day goes well, and the second day slightly less, and then you get home and the next three days you’re sort of knocked out a little. And, so, I really have to make a positive choice. I just feel like to be out on the water, too bad. Then the week after I’m washed out, sort of. You should stop when it is still going really well. |
P2.1: And that’s strange! | |
P2.3: And I don’t want to… | |
P2.1: No, you don’t. | |
8 | P3.2: You have to be very disciplined in the way you allocate your energy. |
P3.6: Yes, yes. | |
P3.2: And you know that’s really a long process. | |
P3.5: Yes. Safeguarding your energy level, that I find the most difficult. | |
P3.6: Right. I’d forgotten about that. Energy is finished, you can, you want a lot, but at a certain moment you just can’t anymore. |
Quote number | Quotes |
---|---|
Relationships with others (partners, children and friends) | |
9 | P1.2: You’re in a relationship in a certain way, and if that changes totally, then you can’t, well, blame either one that it doesn’t work anymore. Hey, you lose your job, you’re suddenly sitting at home, you need help and he (patient’s partner) certainly didn’t have that patience. I mean, before I was in the car, there was a period that I was really very stiff and my leg would still be outside and he would step on the gas. He was already driving off! So when it was over I felt like, I don’t have to keep up the pretense. In my marriage, especially the last year, it was very often simply overstretching too much. Because, you know, you want to keep up, be part of it. And be appreciated in that way, so you accept the situation. I couldn’t then, but I can now. |
10 | P2.1: Even my partner has something …, he understands, but then again he doesn’t. |
P2.4: That sounds very familiar. | |
P2.1: Especially in times when it’s heavy for me, he says: ‘come on, just this little thing’. But then I think: ‘right now you have to leave me be’. And that, that’s so difficult, because if we can’t understand it ourselves, then the other can’t either. | |
P2.2: No, because in fact the slap on the wrist always comes too late. | |
P2.5: You never get a warning signal saying: now you should stop. | |
11 | P3.2: I’ve always been a busybody who never stopped going but at a certain moment, I had a friend, and really, my best friend, she just didn’t have a lot of energy intrinsically, and she said at one point, when I became ill, she just didn’t get it. And she said at a certain point, well then I actually got very mad at her, she says: ‘that disease just doesn’t suit you, I don’t understand that you…’ And then I said, ‘well, I think the disease chooses…’ |
P3.5: Whom does it suit then? | |
P3.2: …randomly selects someone. How can you say the disease doesn’t suit me? ‘Yes but you always had so much energy’. I say: ‘But I didn’t ask for it, did I?’ Also, she’s the one of all my friends who is the least realistic in coping with my disease, she’s still surprised when I’m not able to do something. | |
Performing activities in daily life and leisure time | |
12 | P1.4: Yes, you can’t dress yourself anymore. You can’t wipe your bum anymore. You feel, in that moment, you feel a bit powerless. A bit. Look I wasn’t working anymore, but then you really feel switched off. |
P1.7: Dependent… | |
P1.4: Dependent. I mean, if you can’t even slice your own bread… | |
13 | P2.5: When I’m walking somewhere… If I walk for a really long time, or if I’m on a shopping spree with the girls, then really after an hour, then I have to sit down for a bit. |
14 | P3.4: I’m a big fan of the Antilles. Usually I go with friends, but this winter I’m alone because nobody can get days off. Then I think: oh, should I be doing this? Because then I’ll be there and not able to do anything. So those are, those are actually, small things but… |
P3.6: Limitations you have in your life. | |
P3.2: But don’t you, when you’re there, don’t you have a lot less complaints, because, I swear I really… | |
P3.5: Warmth | |
P3.2: …That really has an impact on my body. | |
P3.4: True, but the flight already takes you a few days to get over. | |
P3.2: And sitting still all that time. | |
P3.4: And 6 hours of time difference. | |
P3.6: Yes, that’s what I mean, I can’t do that. That’s really difficult, traveling is. | |
P3.4: Yes, so before you’ve slightly… | |
P3.5: Simply recovered from. | |
P3.4: And then the fear of, suppose I get something there? Then I think: oh, should I be doing this? |
Quote number | Quotes |
---|---|
Pain | |
15 | P1.3: That there are things you can’t do, well, you can solve that in another way. But the pain I think is the worst. |
P1.4: It’s so tiring, isn’t it? | |
P1.6: Yes terrible. | |
Fatigue | |
16 | P3.5: The problem is simply that I feel very insecure about fatigue. The fatigue that, that I… |
P3.6: Fatigue, yes, that’s right. | |
P3.5: … notice all the time, I find it very bothersome to function around noon, when I’ve worked I simply have to sleep for an hour. | |
Emotions | |
17 | P1.1: The first thing that popped up when I was asked to participate in these interviews was a kind of old rage from 15 years ago that it happened to me. |
18 | P1.2: This last period so many things are happening one after the other, eh, because of this medication, all kinds of side effects, that I’m really angry and also a bit desperate. |
19 | P2.3: There was a moment I had the feeling of why does this have to happen to me? |
20 | P2.5: I notice that at times when I’m really tired, I can be really grumpy with those around me. |
Comprehensibility
WHO ICF core set for RA comparison
WHO ICF core set for RA | RAID score |
---|---|
Body functions | 1. Pain |
2. Sleep | |
3. Physical well-being | |
4. Emotional well-being | |
Body structures | Physical well-being |
Activities and participation | Functional disability assessment |
Environmental factors | Coping |
Fatigue |