Participant quotes
| Theme | Quote number | Illustrative quotes |
| Good compliance with the intravitreal treatment | 1 | ID6: That would be like shooting yourself in the foot. I still hope that the medicine can help to keep my vision stable so that I can continue to see |
| 2 | ID20: As long as those with more expertise than me recommend it, then I will continue | |
| 3 | ID18: At the moment I am unable to explain, as it is many years since I received and read them (patient educations brochure), but isn’t it a hardening of the arteries in the eyes. That’s what it is. I don’t think that you speculate when you first read it, but that’s just the way it is | |
| 4 | ID20: I don’t really know (what nAMD is) | |
| 5 | ID3: I really don’t know (if treatment works). Otherwise, I feel that it’s going pretty straightforward. Fortunately the vision hasn’t dropped that much. So you can’t really say that it’s helping. I don’t think it’s that great | |
| 6 | ID6: Both yes and no, because during these periods, it has gotten worse but what would the result be if I hadn’t received the treatment. I can’t be sure | |
| 7 | ID20: I trust medical science and that’s how it is | |
| 8 | ID1: I do what the doctor says is best for me. I don’t question that. I don’t look for alternatives | |
| 9 | ID4: I considered acupuncture, but I don’t know if it helps | |
| 10 | ID5: The day before treatment, I start to feel a little nervous and uneasy about coming here, but it’s not like I’m panicking | |
| 11 | ID6: The day and night before, it’s always in my thoughts. I think about all the negatives … Will they find anything in the other eye or something like that | |
| The dual role of relatives | 12 | Relative of ID3: He feels that he depends on me for many things, for example, driving, which can upset him because he is unable to do it himself |
| 13 | ID3: Sometimes I feel down if there is something that I can’t read. As long as there are two of us, then we can cope. It would be too much if you were on your own. Then it would be bad. Many of our friends have lost their other halves and that’s tough | |
| 14 | ID12: I have my children and at the moment my daughter driving me, making sure I get home again | |
| 15 | Relatives of ID12: I live in (a), so I drive from (a), to (b), and pick up my mother, and then we come here (to hospital). It’s just a suggestion, that a team could be sent to (b) to perform the treatment. That could be nice | |
| 16 | ID2: I don’t feel that I need to talk about it (nAMD). I have a good friend that also has it. He lives in Copenhagen, and sometimes we share our experiences, and about how the treatments are apparently slightly different | |
| 17 | ID10: I have … (husband) living at home with me, and he has difficulties walking, and just the other day had a fall. If he falls when I’m not at home, then we are really struggling, because he never has his phone with him. He’s 90 years old, so we are in an age group a little older than the average. Therefore I thought that I should stop (treatment for nAMD) | |
| Treatment commute | 18 | ID14: Sometimes you have to sit and wait for two or three hours over there in the waiting room. I find that difficult |
| 19 | ID14: That wouldn’t be a problem (getting treatment 17 kilometers from the patient’s home). On the other hand, I’m so old that I can’t be bothered having to adapt to this, that and the other. I think that it’s all right, with the sitting and waiting. That’s just the way it is sometimes | |
| 20 | ID7: I have learned an incredible amount from for example, immigrant drivers. I am a very talkative person and I get into conversation with people very quickly, so I get to discuss many interesting things. I have learned a great deal about their way of life. I see it as a little excursion, even though I can easily keep myself busy at home | |
| 21 | ID19: It takes 4–5 hours, perhaps a little more sometimes. I’m happy to do that. As I said, I am happy to receive the treatment, and it helps. So for that reason, I don’t see that it is so problematic that I would choose not to take the treatment. The only consideration is, that I have to organize the transport from home. I can’t see the signs at the train station as they are too high, and if there are sudden changes in the travel plan, then I can get a little frustrated | |
| 22 | ID11: You leave from home in the morning and then there is the wait to come home again. You should try sometime. I used Falck, which was fine, but after the treatment, they said at the department that I would be collected within an hour, but then you miss the ferry and you are left waiting an extra 2 hours. That’s when we said. We don’t want to do this anymore. I was called in again after 2 months, so we started to drive on our own | |
| 23 | ID11: (The reason not to stop treatment again) is probably the fear that the vision will disappear completely, which the doctors claim will not happen (if continuing the course of treatment) | |
| Hospital barriers | 24 | ID3: We know in advance when we have to go in. They let us know up to three times. That’s great. We can always call them up to talk. It’s never been a problem |
| 25 | ID21: Sometimes as a patient, you are at a loose end, not knowing what to do or who to talk to. In the beginning, it was myself that informed them that it was time for my consultation / treatment. In other words, they failed to send me new appointments without me needing to ask for them. After about a half year without hearing from them, I contacted them, which gave a positive result. The appointment arrived the day after | |
| 26 | ID13: They are sent to my Digital Post, only one at a time. So now I’m curious to see if it coincides with my summer vacation | |
| 27 | ID19: I wish that you could have an appointment when you really need it. When I reach the sixth week, then there can’t go a long time. Otherwise, I have a problem. Sometimes it can be more than 9 weeks if I don’t do anything. Unfortunately, I need to use acute appointments occasionally which I’m not happy about. So the system does not work properly | |
| 28 | ID5: I feel that it would be good if there was an optician involved in the treatment here, working together with the doctors. Then we wouldn’t need to be responsible in finding an optician that knows something about nAMD and if they are trying to cheat us. I really feel that I am sitting between 2 stools, and it’s not because we don’t have enough money but I feel that it’s still expensive. I’ve asked some friends, and told them that it costs 23 000 (DKK) for glasses, which they think is totally wild. They said that they have the same varifocals, which cost 12 000 (DKK) | |
| Preventive health literacy | 29 | ID18: They once told me to take a load of vitamin pills, but my stomach was unable to cope with it. It protested, so now I take one a day during the whole year |
| 30 | ID8: I know that it makes sense to quit (smoking), but I don’t believe that there is any connection. My daughter’s father has never smoked and he also has bad eyes | |
| 31 | ID4: With arthritis, you can do something to help yourself. You can do it with diet. You can do it with exercise and you can do it with training and (physiotherapy?). You are personally involved. With this (nAMD), you are not involved because it takes place on such a small level. You are just let off the hook and you can’t do anything yourself. That’s where I think the difference lies, that you feel as if you can make an active difference yourself and it also helps mentally that you can do that | |
| 32 | ID5: So I said to myself that I should try and cycle more and also go to fitness etc. I have a feeling that you should avoid seeing too much television. You should not be looking at screens too much. I don’t really know. I’m also really unsure about the lubricating eye drops (viscous) |
ID, identification number of patient; nAMD, neovascular aged-related macular degeneration.