Factors influencing the experience of illness
Information gathering and nocebo
Patients expressed that reading a condensed summary of information about their condition through a prescribed app, covered by their health insurance, instilled confidence in the provided information:
B: Well, because it's a specially developed app for endometriosis, it's also trustworthy. That means you can trust what you read and on the internet it was always like that at the beginning - well, you just read through it, but is it really all true?
In contrast to this, research on the internet sometimes revealed disturbing information that led to uncertainty and fears:
B: Well, when I did some research on the internet, I must say I was very shocked. I was also frightened by all the things I read about how this could manifest itself, that it might not be possible to fulfil my desire to have children. That was the worst thing for me.
B: I remember the very first piece of information very well. It was in hospital, because the day after the operation the doctor came in and said: "Do you already know what you have? Has anyone told you yet?" And then I said: "No. Nobody was there." And he said: "Yes, it's endometriosis." Then I asked him what it was and the doctor said to me: "Just google it." And that's what I did. And that was my first piece of information about endometriosis. As expected, it was just horrendous. Because you can find an incredible amount of information on the internet about women who have had lots of operations, who have had their organs affected and who have had something removed. And I think that was just terrifying.
Recognising the individuality of the disease
Our patients realised that it is not possible to make any predictions about the course of their own illness based on the progression of other patients. The app supported recognising the individuality of the disease´s course:
B: Because many patients have endometriosis and it's different for everyone, but what about me and what information is relevant for me.
B: [...] because I have experienced this all too often in therapy, that it always boils down to this. Wanting children, children, children, children. And I thought it was really good that the app doesn't do that.
Promoting self-efficacy
Participants rated self-efficacy-enhancing education and guided physical exercises positively. Self-efficacy in coping with the illness was strengthened. Individually, using the app could have a positive impact on the perception of pain:
B: I know that if I have this episode now, for example, when I'm not feeling well at all and I'm at home, at least I know what I can do during that time. I can do yoga, relaxation exercises, but I can also make sure that I don't let myself go during this time.
Association and framing of the disease
Patients reported that the educational programs provided by the application affected their personal perception and led to a shift in how they framed their illness. In some cases, an increase in acceptance of the illness was observed. A transition from an anatomical-pathological understanding of the disease to a physiological-dynamic understanding was achieved. In addition, acceptance of a bio-psycho-social disease model and a multimodal therapy approach was achieved:
I: And would you say that your perception of the disease has changed as a result of using the app? B: A little, yes. I: And how? B: I no longer see the illness as such a burden for me. It also explains to me how I can deal with the condition and what could help me to reduce the pain.
B: And I think you also have to work a lot on yourself to come to terms with the illness and rework and rethink your own structures.
A common narrative pattern is the lack of social esteem and attention for endometriosis. A lack of "being recognized" in a social context is reported by all patients. Therefore, Patients positively rated the exclusive addressing of the disease endometriosis through the application:
B: Well, you're actually ill and therefore need protection, including in the work context, for example protection against being let go. It's incredibly difficult because the illness is not recognised.
B: I was prescribed the app. I was really pleased about it because I thought it would be nice to finally have something for endometriosis to support it a little.
Evaluation of the app
The application provides relaxation exercises through video tutorials, which has frequently received positive evaluations:
B: What helps me a lot are the relaxation exercises. I notice that very positively. When I'm stressed and I do one of these exercises, it helps me to calm down a lot.
B: But the individual relaxation exercises, for example, [...] I really like that. Just coming down and forgetting about everyday life.
One patient did not like the way the guided meditations were spoken:
B: The narrator had such a compassionate voice I was in tears. And I had to stop at that point because I felt so sorry for myself [...]
Guided physiotherapy measures were often rated as helpful and interesting:
B: I've never heard that before either. For me, the pelvic floor is when you're pregnant. But I hadn't read anything on the internet about doing it this way before.
Other tutorials provide education on endometriosis, the physiology of pain development and pain assessment. Some of the interviewed patients responded positively to the educational content
B: And then to be able to read this information page again. That helped a lot and even today, if something comes up, I have a look at it first.
B: I imagine that if I'd had the diagnosis back then and had had this app, it would have helped me a lot.
Some patients stated that they had not gained any additional knowledge from the offered education:
B: [...] because I had already done a lot of reading through a book, [...] there wasn't much new for me personally.
The pain diary offered was evaluated ambivalently. The possibility of objectifying the burden of illness and being able to monitor changes longitudinally was positive.
B: Well, first of all, I thought the structure of the app was great. In addition to the various exercises, there is also a calendar, which helped me a lot, especially because my gynaecologist or the women's clinic wanted me to keep a diary of my pain.
B: And (.) just to know that you can get an overview of how much it actually takes up and not always purely from an emotional point of view. But really how much is it in reality? And it definitely helped me to get real insights into that.
The time required (hurdle), the daily preoccupation with disease symptoms (fixation) and the excessive demands of the selection options in the pain diary were negative:
B: Entering the symptoms into the app, for example, is hell for me.
B: I did that for a while with the pain diary [...] But I also realised it wasn´t good for me to deal with the pain and think about it all the time. What were they like and when were they worse? My whole life revolves around the illness and the pain anyway.
Dietary changes were rarely implemented, but the nutritional information was new to many patients.:
B: Well, I didn't find out anything about nutrition on the internet and from friends and gynaecologists, for example. [...] That helped me a lot, even though I eat the same diet anyway. That's not a big change.
User behaviour
Clear patterns of use emerged. One patient couldn't use the app because of time constraints. Some used it intensively at first, but gradually reduced their use until they stopped.:
B: [...] I used it euphorically on the first, second and fourth day because I said I wanted to test it, because you have to be able to do something with it. But then it was actually far too much for me. [...] It simply cost me an incredible amount of time. [...] So, as I said, because I have four children, it was simply an enormous amount of time for me.
B: It was just too much for me personally, as I said before. And then I started to let it creep up on me. Then at some point I - well, you can be reminded that you should or can use this app. At some point, I switched it off and then I stopped using it and sort of let it fade out.
B: (laughs) Well, I really haven't used it at all in the last few months. At some point I stopped looking at it and then I deleted the app after the code expired.
Some patients stated that they did not use the app regularly, but when necessary if they were feeling unwell:
B: Well, if you're doing well, then you don't tend to look at it and if you have some kind of complaint and then think oh, what could I do for myself now?
B: Because, of course, there are also lots of exercises that take, I don't know, maybe half an hour or longer and you can't always fit them into your daily routine. So, I didn't use the app every day either. So I don't think anyone will probably do that either. It's probably too much at some point.
Two patients stated that they were already able to implement all measures on their own so that they could act independently of the app:
B. So I also ended up doing a few yoga exercises where I didn't need my mobile phone at all. Where I knew okay hey, I can do it like this. I don't have to use the app forever. But they were definitely a good part of the app, especially in this learning process of how to use it.
Two patients used the app regularly, even for months.
B: I was prescribed the app. I think two months ago. I can't remember the last time I was there. And I've been using it every day since then.
B: Exactly, I've already had the second activation code sent to me. I've already entered it because I've definitely said that it's incredibly useful for me. Especially when the diagnosis was just not that long ago, so if I'd had it two and a half years ago, I think it would have made things a lot easier.
Options for improving the app
In addition to the time required to use the app correctly and regularly, patients described other shortcomings. One patient had concerns about data security and the use of personal data:
B: After you have logged in, another authentication procedure pops up, for example with a fingerprint and the information that the data will also be passed on by the operating system, etc., which is too insecure for me personally.
Three patients had a negative view of incentives and automated reminders, believing that they sometimes put extra pressure on patients:
B: [...] on the other hand, if you haven't used the app for two or three days in a row, you get bombarded with emails. "Is everything OK with you?" Or you get an email saying: "Hello?" And then you think to yourself, that you´re simply having two days without pain.
The exchange with other patients, from which one patient had subjectively benefited, was missing in the app:
B: I've heard a lot from other women on social media, especially on Facebook, about how they deal with the disease. I miss that a bit in the app, this exchange with others. Of course, not everything works for every woman, but I miss having this support.
Specific suggestions for improvement were to integrate information about concomitant diseases of endometriosis and to offer help in applying for welfare state support:
B: [...] there are so many concomitant illnesses that you hear about again and again, if there was perhaps a bit of an overview. Because that also helped me back then. [...] for example, that I have a lactose intolerance. [...] hypothyroidism, or that many people have fibromyalgia.
B: So maybe a bit more help in the Endo App with the degree of severe disability [...] how to apply for it.
Wishes for the future
In expressing their expectations for the future, patients voiced specific concerns, addressing all stakeholders in the healthcare system. Their primary focus was on the desire for enhanced care, coupled with a more effective reduction in the burden of disease:
B: So for me, I hope that I no longer have the pain that I had.
B: Simply create this awareness first. First of all, hey, this disease exists, many people don't know about it.
B: The only thing that really bothers me is the cost of fertility treatment. The fact that a disease has been proven, that problems can occur and then those affected still have to pay half of the costs if they are married. People are often pressurised into getting married.
B: Politicians could also do more to ensure that the disease receives more funding to advance research, and politicians also have a lot of influence on health insurance companies.
B: And also with the disability classification. I am at 50 per cent. I fought for it for a long time. I've always applied for a deterioration after an operation. [The degree of disability is determined by the German welfare office and may be relevant for other benefits, such as the provision of social services.]