Table 2.

Table of themes, subthemes, and supporting quotes

Themes	Description theme	Subthemes	Supporting quotes
Theme 1 Illness perception	The personal understanding and beliefs of the participant about a medical condition or disease. Illness perception follows the processing of illness stimuli. The illness perception is guiding the development of a coping strategy. This process is dynamic and constantly evaluated	Illness stimuli	[The participant talks about the period before diagnosis]
			[Interviewee 16]: ‘’It was a difficult time, because I knew something was wrong with my body. At home they did not believe me, even the general practitioner did not believe me. At that moment, I even began to doubt myself. Even though I know my body the best.’’
			[The participant talks about the period before diagnosis]
			[Interviewee 12]: ‘’During that time I also went to a party. I comb my hair, I put on make-up and then you see people who have not seen you for a while. They said: ‘oh, you look good!’, but in the meantime I tried my best not to cry.’’
		Cognitive illness representation	[Interviewee 3]: ‘’Last year I was able to run 10 km. Now that is no longer possible because of the pain in my groin. I did not think the pain was due to the disease, so I kept running with the pain.’’
			[Interviewee 8]: ‘’Scary thoughts crossed my mind. I thought that after five years, I would end up in a wheelchair… fully stiffened.’’
		Emotional illness representation	[The participant describes his emotional state after being declared incapacitated for his job]
			[Interviewee 5]: ‘’It was very difficult for me because I liked my job. I was suddenly no longer allowed to do my job. I have done that all my life and I could not do that anymore, it was very hard for me.’’
			[Interviewee 7]: ‘’I was in a rut. I felt like I was nothing anymore. Let me put it this way: I did not feel like doing anything anymore. […] At one moment I got everything at once. I did not want to tell you… I have had two TIAs (transient ischemic attacks) around the same time when I was told I had axial spondyloarthritis (axSpA). I was rejected from work. That all came within a time frame of two years.’’
			[…] ‘’I thought, leave me here, it is fine… I am not doing anything anymore.’’
		Coping strategy	[Interviewee 2]: ‘’I have made adjustments to my house. I built this house so it is suitable for me to move through when I am in a wheelchair. Because the expectations were, you could end up in a wheelchair. […] That is what I was told back then.’’
			[Interviewee 17]:’’My father identified himself as his disease, ‘I am so sick!’. However, my youngest uncle kept on living, he kept being active. In my opinion, he [uncle] was better off. So, I do what I can. Maybe it takes a little bit more time, but I will keep trying and will not give up
Theme 2. Participants’ needs regarding content	The most important topics of patient education (PE) in patients with axSpA according to the participants	Topics of PE	[Interviewee 18]: ‘’ I think the problem with PE topics is that it is always general information. I think every situation is very specific. You can have a 100 people with the same diagnosis who have very different symptoms and on who the disease has a very different impact on their lives. It just depends on how you want to shape your life and the extent the disease affects you.’’
		Prognosis of the disease	[Interviewee 8]: ‘’I have had very scary scenarios in my head that in five years I would be numb […]. It would be nice to have a conversation about this with someone who knows a little more about it. That it can be nuanced a little.’’
			[Interviewee 10]: ‘’[…] of course you can never say as a doctor: ‘you will look like this in twenty years.’ You cannot know what the future looks like, but they have to give you some examples about how it could be. There are a lot of people who do very well with medication, but there are also people who may end up in a wheelchair.’’
		Treatment of the disease	[Interviewee 5]: ‘’[…] I did not get Enbrel (type of biological) right away. I have been using that for a long time now, for 15 years. It has not been on the market for very long, so I wonder: what is the long-term effect on your body? That is still a bit of a gray area.’’
			[The participant is talking about shared decision-making concerning medication options]
			[Interviewee 12]: ‘’The healthcare provider (HCP) left the decision about medication largely to me and I thought: How should I know?! If you are 90 years old and you have to choose to be admitted to the hospital or not, then you really make a decision between two clear options. In this case I found it very difficult. I did not really feel the need for influence in the decision at that moment. Based on what should I make a decision? […] I do not understand it anyway, I do not have the knowledge and I don't feel like studying it.”
		Coaching to self-management	[Interviewee 17]: ‘’I miss some guidance in things you can do yourself regarding the disease. I made an appointment at the dietitian myself. Little is said about what all your options are outside of the hospital.’’
			[Interviewee 14]: ‘’I would find it very interesting if a HCP would give me more information about the influence of nutrition on the disease.’’
			[The interviewer asks the participant about the experience of the rehabilitation trajectory and the associated difficulties.]
			[Interviewee 1]: ‘’That was quite an intensive process, but I was still studying at the time. So it was not so difficult then to find free time. I think you had to be there half a day per week. I thought that was quite a lot. […] It was not that it was bad there and luckily I had enough time. But if I had worked, I would have thought: what am I doing here.’’
			[The participant talks about finding a rest-activity balance]
			[Interviewee 17]: ‘’I find it very difficult to not do everything myself, so they [HCPs] recommended me to take it more slowly and to take more rests in between tasks. I find it very difficult to take it more slowly…’’
Theme 3 ‘Availability’ of PE	The experiences and preferences of the participants regarding the different modalities and moments of the received PE, the amount of time that was given to process the PE and axSpA tailored information for relatives and friends	The different modalities of PE	[Interviewee 9]: ‘’[…] you pass on the message, you give flyers and then you say: ‘In two weeks we will have telephone contact and if you still have questions you can ask them.’ […] Instead of having to wait another year before you can ask questions again, because then you keep thinking: how about this… and then this…’’
			[Interviewee 20]: ‘’I prefer receiving information from the HCP, but I also like to read everything again when I come home. Normally I search on the internet for information, but a flyer is also useful, in which all the important things are stated.’’
			[The participant talks about the telephone call in which she received her diagnosis. She is still very emotional about what happened years ago]
			[Interviewee 12]: ‘’I had a lecture when the rheumatologist called, so I did not answer the telephone. A little later she called back and well. That was the moment I was told my diagnosis, standing outside the lecture hall somewhere [emotions are heard in her voice]. It still came as a really big blow.’’
			[Interviewee 13]: ‘’I always received a flyer with only 1 situation, the old retired person who could finally work in his garden again. Alright, but what about young people such as myself?
		The different moments in which PE is important	[Interviewee 2]: ‘’Last year I had a lot of symptoms of the disease. If you are doing badly, you will also delve into the disease a little more. When you are doing well, you think, 'oh, great!'. The degree of symptoms therefore determines to what extent you want to delve into the disease.’’
			[Interviewee 3]: ‘’When you are emotional, it is nice to go deeper into certain matters. Then it is also nice if you get more information about what concerns you.’’
		Sufficient amount of time to process the PE	[The participant talks about how the diagnosis was communicated to her]
			[Interviewee 12]: ‘’I believe it was a very short conversation; this is the diagnosis and good luck with it. […] I think that is something that could be improved because you need time to process it.’’
			[Interviewee 16]: ‘’I felt like I was missing a lot of information. The last 3 years went by so quickly and so much has happened. At consultations we talk about medication and we discuss how to move forward. For other topics is no time. […] I would like a conversation in which we discuss the information that I have gotten the past years. I have not had such a conversation in 3 years… that is quite a long time.’’
		AxSpA tailored information for relatives and friends	[Interviewee 15]: ‘’In addition to the patient, there is often a family with a partner and children and I miss PE directed to them. The disease has not only impact on the patient himself, but also on the environment. So maybe you could create something for them in terms of information provision.’’
Patient-HCP relationship; a prerequisite for effective PE	Prerequisites mentioned by the participants that affect the quality of PE that they receive	A trusting participant-HCP relationship	[Interviewee 12]: ‘’I came back from Russia in January and had an appointment with my HCP. She asked very specifically, not only about my health in Russia, but also how the trip had been. That personal contact with your HCP is very pleasant.’’
			[Interviewee 6]: ‘’What I do notice, maybe that is another thing I want to pass on to you, is that the trust you have as a patient in your HCP is essential to everything else.’’ […] ‘’that does something to the image of how professional someone actually is and that also does something to the image of how knowledgeable someone is in their profession. That is why I sometimes think: I get the answer to my question but do I trust that the answer is correct, that it is complete… that I have the right person in front of me. Then you notice that the moment you do not have trust in your HCP, a lot of doubt is created. Do we get complete information?’’
		Multidisciplinary and interdisciplinary attunement between HCPs	[Interviewee 1]: ‘’A sport doctor only pays attention to his specialities, as does an orthopaedist. I find it strange that an orthopaedist does not think: ‘oh, maybe this could be something rheumatic!’. It is frustrating…’’
			[Interviewee 5]: ‘’What I noticed is that during my diagnostic process, nobody actually looks at the bigger picture. Physical therapist always see an explanation for your symptoms in the muscles. The orthopaedist said the position of my back was not good. […] In the end they all separately found something to explain my symptoms, but no one saw the interrelated aspects.’’

HCPs healthcare providers, AxSpA axial spondyloarthritis