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Table 3 Quotes related to theme 3 (effects of personal report and feedback session) and theme 4 (recommendations on the use of ESM in clinical practice)

From: Recommendations for the use of long-term experience sampling in bipolar disorder care: a qualitative study of patient and clinician experiences

Quote patients

Quote clinicians

Theme 3: effects of personal report

 ID2: Actually, last week a lot of people asked me to go here or go there, and I told them, “actually I’m not feeling so well, I’m not sure.” And they started saying, “what does it matter, if you’re already sick you should come anyway and be sick tomorrow”. And then I thought, “no, I’m not doing this because I know how this will go, then it will happen that day and again and again the next days and before you know it, I’m really not doing well and that will have its effect on others as well.” So in that way it worked maybe, a sort of small life lessons. Interviewer: Is that something that the report taught you, or? ID2: Well, to see that on paper, that really worked, those large mood swings. That you really have some sort of reflective moment. This is what happened then, and in that sense I think unconsciously shaped the way I think, I think. (female patient in her twenties)

 ID25: For example, for one client, you later explicitly investigated sleeping, tiredness. After using cannabis, for example, the night before. Well, those very specific data coming out of the study are very helpful. Because I can have a very strong intuition that something is the case, but now we have it on paper, it is confirmed. Because she herself has supplied the data that shed a light on the situation. And there were more explicit outcomes: hours of sleep, energy, that’s what we discussed, that’s helpful to integrate in relapse prevention plans. (male psychiatric nurse in his fifties)

 ID15: Now I know immediately that when I really start to worry and feel tense, it is the beginning of a depressive episode. If it lasts for about a week, I know that it is the start of a depressive episode, and I start taking medications, and I don’t sink so deeply. Interviewer: Does this help?  ID15: Yes, because I start taking my medications sooner. Because usually it takes a week or three before they start working, and then I notice a bit sooner that the tension starts to disappear. Normally I am really tense first and I no longer want anything at all, and because the medications take a while to start working, you reach the point that nothing works anymore, that you really have to fight to keep doing your daily activities. Now I get there on time, because I’ve already started taking my medications. So I don’t sink so deeply anymore. (female patient in her fifties)

 

 ID14: Ah yes, I couldn’t do anything with it [personal report]. But that maybe also has something to do with my expectations. I don’t know what I’d expected. Probably I’d expected that I… that something about myself I didn’t … That’s what I’d hoped, maybe. I’d hoped that something would come out that would help. A piece of the puzzle. You know. You really want that it does something big. And it mostly was a confirmation of everything I already knew. And that is okay, but that is not what I’d hoped. Nice that I know myself better than I thought, I liked that, that there were no surprises. But I also thought, “and what now, now I have this, and what should I do?” So it didn’t help me as much. (female patient in her twenties)

 ID23: If you look at the results, it really is so hard to interpret them. It’s still much more complicated than you had hoped beforehand. On the one hand, it’s a lot of data and I like graphs and such, I think they’re nice, you have a sort of overview, and well, about activities and such, it is solid. But what comes out as predictors disappoints me. Such that I think: it’s not so unequivocal or it’s not so easy to predict. Especially for people who are so instable in their mood, then the story gets even more unclear. (male psychiatrist in his forties)

Theme 4: recommendations for the use of ESM in clinical practice

 ID5: Like I’m saying, if you’re young you’re really inclined to go against everything. If somebody says something, you won’t accept it, whereas if you’ve experienced it yourself, then you just know, you can’t go around it. You see, without such a study it can take years before you’ve been through all that or have experienced a relapse or episode. And that’s such a pity. Whereas if you can demonstrate such small changes with this study, they don’t have to experience it all themselves. That they don’t experience all the very heavy consequences, but see the small changes in themselves, which they have filled out themselves. (female patient in her forties)

 ID25: I would really try to develop it tailored to the situation of the patient. And maybe link it to the relapse prevention plan. And it would be even better to also link it to the Life Chart method, for example. Or a sort of mood app, right? I mean, those exist, but are usually not so comprehensive. This way, you have all the information that you could use in treatment, and you have the aspect of self-management that can directly, in that moment, be adapted or stimulated even. (male psychiatric nurse in his fifties)

  ID10: During therapy or something, it [ESM] might also be very easy. Then the system could directly inform your clinician, rather than bringing a copy yourself, so to speak. That they [the clinicians] could directly, if you give your consent, have insight in the data. And yes, the system doesn’t lie. You can show that you have filled it out, at those moments. (male patient in his twenties)

 ID26: The difficulty remains that this is a self-report measure, so people indicate their own visions on their problems. There are people, if you ask them a number between 1 and 10 to indicate their stress level, who will say a 10 with a very calm demeanor. Or the other way around, sitting there like thís [raising arms to indicate high stress level] saying, it’s a 5. An app like this [ESM] will have it wrong too, people are not so good at judging themselves. So you always have to be aware that it is not a science, in fact it is their vision on their problems. (female psychologist in her forties)