Characteristics of the population
Seventeen patients were included in the study. The average interview duration was 30 [12-50] minutes. The characteristics of the patients are presented in Table 1.
Table 1
General characteristics of the participants
Patient ID | Gender | Age (years) | Type of cancer | Treatment | Combination oral + intravenous treatment | Duration of treatment (months) | Duration of interview (min) |
1 | Female | 35 | CRC | Capecitabine + oxaliplatin | Yes | 1 | 20 |
2 | Female | 45 | CRC | Capecitabine + oxaliplatin | Yes | 1 | 35 |
3 | Male | 35 | GIST | Imatinib | No | 17 | 23 |
4 | Male | 59 | HCC | Regorafenib | No | 11 | 25 |
5 | Female | 89 | CRC | Trifluridine/ tipiracil + bevacizumab | Yes | 4 | 25 |
6 | Male | 60 | CRC | Trifluridine/ tipiracil + bevacizumab | Yes | 6 | 50 |
7 | Male | 78 | CRC | Capecitabine + oxaliplatin | Yes | 2 | 26 |
8 | Male | 66 | CRC | Trifluridine/ tipiracil + bevacizumab | Yes | 5 | 40 |
9 | Male | 83 | GIST | Imatinib | No | 42 | 20 |
10 | Male | 41 | GIST | Imatinib | No | 24 | 12 |
11 | Female | 50 | CRC | Capecitabine | No | 4 | 50 |
12 | Female | 52 | CRC | Regorafenib | No | 7 | 30 |
13 | Male | 79 | CRC | Encorafenib + cetuximab | Yes | 5 | 45 |
14 | Male | 80 | HCC | Sorafenib | No | 10 | 32 |
15 | Male | 70 | HCC | Sorafenib | No | 12 | 30 |
16 | Male | 63 | CRC | Capecitabine + bevacizumab | Yes | 11 | 22 |
17 | Female | 55 | Neuroendocrine pancreatic tumor | Sunitinib | No | 9 | 23 |
Eleven were male. The median age was 60 [35-89] years. Ten patients had colorectal cancer, 3 patients had hepatocellular carcinoma, 3 patients had gastro intestinal stromal tumor (GIST) and 1 patient had neuroendocrine pancreatic tumor. Five patients were treated with capecitabine, 3 with trifluridine/tipiracil, and 9 with tyrosine kinase inhibitors. Eight patients were treated with a combination of oral and intravenous anticancer drugs.
Structural analysis
Five major categories that may influence adherence to oral anticancer drugs were identified by the analysis: demographic and socioeconomic factors, disease-related factors, care system factors, treatment-related factors, and factors related to patients’ representations and pathways.
Demographic and socio-economic factors
With regard to demographic and socio-economic factors, three themes were identified: professional activity, medical and social family environment and access to treatment.
Three patients mentioned their professional activity. Indeed, one patient reported to us: "well, I don't work anymore, so I have time to think and organise myself according to that" when talking about his illness and his treatment. Another patient with a professional activity told us about his difficulties on days when he does not work and is away from his usual routine: "when I’m working, I know that at breakfast it becomes a little ritual, but as soon as I leave this work context, on holiday, at the weekend and all that, I sometimes forget quite easily".
Two patients mentioned their family circle working in the medical-social sector. Indeed, one of the patients declared that he followed his wife's instructions as a nurse: " (…) I have my doctor at home, so I follow his instructions". Another said: "my wife is a pharmacist (...), she doesn't forget, if I tend to forget a bit, I have the right to a reminder". Finally, two patients mentioned access to treatment: "(...) it's good that I can take them, treat myself without it costing me a penny from my pocket, so there you go".
Disease-related factors
Concerning the factors linked to the disease, only the theme of seriousness, mentioned by two patients, was identified in connection with drug adherence: "it's too serious to do anything with it" and "unfortunately, we know that one cancer in two wins".
Care system related factors
Regarding factors related to the care system, three themes were identified: the patient’s trust in the oncologist, the quality of information given by the oncologist at the initiation of treatment, and the quality of care.
Concerning the patient's trust in the oncologist, 12 patients mentioned it: "I trust them because I think they are people who know their job well. They do everything to help us".
Ten patients mentioned the quality of the information given at the start of treatment. For some, the information was clear and appropriate: "he presented it to me as a better way of life, it's more pleasant" or "what's good is that she first mentioned the fact that my body was suitable for chemotherapy according to the analyses". For others, the information given was not verified: "the surgeon told me on the last day when I left that normally there would be no treatment". This patient shared with us her disappointment at receiving treatment when the surgeon had told her after the operation that she would not have any.
The quality of care was mentioned by 7 patients. Some of them expressed their satisfaction: "If I talk about a problem and they take care of it, if there is an answer, I'm fine. If there's nothing, I say I'll stop taking it because it hurts me too much. There, I see for my problems, they take care of it" and others told us about the availability of the care staff: "I was very touched, he told me if you have a problem at any time, never hesitate to call me". The emblematic verbatims concerning demographic and socio-economic factors, factors related to the disease and to the care system are presented in Table 2.
Table 2
Emblematic verbatims concerning demographic and socio-economic factors, disease-related factors and care system factors
Categories | Themes (number of quotes) | Selected verbatims |
Demographic and socio-economic factors | Professional activity (3/17) | - Well, I don't work anymore, so I have time to think and organize myself according to that (P7) - I'm a bit tired of it but it doesn't matter, I'm retired. We do it the next day and that's it. (P16) - When I'm working, I know that at breakfast it becomes a little ritual but as soon as I leave this work context, on holiday at the weekend and all that, I sometimes forget quite easily (P3) |
Medical and social family environment (2/17) | - So my wife is a nurse, so I was following, I have my doctor at home, so I was follow his instructions (P3) - My wife is a pharmacist. She's used to distributing medicines and she doesn't forget, if I tend to forget a bit. I have the right to a reminder (P15) |
Access to treatment (2/17) | - The first time I went there was the price of medicines, I was a bit shocked because every month it's about 1000 euros, I think it's 1000 euros, I had to see the bill for the medicines... so it's true that it's not nothing. And we say to ourselves that we are in a beautiful country, a beautiful system or I've been taking these medicines for two, one and a half years, so it's good that I can take them, treat myself without it costing me, a penny from my pocket, so there you go (P3) |
Disease factors | Gravity (2/17) | - Unfortunately, we know that one cancer in two wins (P6) - It's too serious to do anything with it (P17) - Oh, I can't take that lightly. That's still there now, it's getting better. But I'd say that since 2015 I've had this, there hasn't been five minutes in the day when I haven't thought about it (P17) |
Care system factors | Patient’s trust in the oncologist (12/17) | - I avoid going on the Internet because there is so much, there is so much contradictory information that I don't look at, I for me, I necessarily ask a medical professional (P2) - I trust them because I think they are people who know their job well. They do everything to help us (P12) - If you don't trust, you buy a gun and then put a bullet in your head, it's no use (P6) - I say that it is the person in front of you who is qualified to advise you better: if you trust him, you do what he tells you to do... (P7) |
Quality of information given by the oncologist at the initiation of treatment (10/17) | Clear and appropriate information: - "what's good is that she first mentioned the fact that my body was suitable for chemotherapy according to the analyses (P1) - And Doctor X she's very good too, she explains things well, it's important, I think (P13) - Pff bah the leaflet uh, well fortunately doctor X had given me some side effects on another sheet, we have another sheet. It's more succinct, but I still read the leaflet. (P11) - He presented it to me as a better way of life, it's more pleasant (P16) - So I was given a sheet with all the side effects. So we went through them a little bit and then she told me that just because we had a sheet of paper with side effects on both sides didn't mean we were going to get them. But they are obliged to tell us everything and that too (P11) Incorrect information: - And the proof, it was supposed to be harmless for me and finally, the first treatment, the first week, it was rather a technical knockout so I didn't find out more than that (P1) - the surgeon told me on the last day when I left that normally there would be no treatment (P2) |
Quality of care (7/17) | Satisfaction - That's why I stayed at the Nantes University Hospital, because I find a lot of benevolence and good care. They always listen to me, that's it (P5) - I think we are part of a team in these cases. There's the doctor, and there's the patient and these are not trivial illnesses, so we're part of a team (P6) - If I talk about a problem and they take care of it, if there is an answer, I'm fine. If there's nothing, I say I'll stop taking it because it hurts me too much. There, I see for my problems, they take care of it (P8) - I am well accompanied by all the staff of the University Hospital. I would like to point this out. From the first day I came to the emergency room until today (P11) Availability of care staff - But knowing, having a phone number, having a name, it's reassuring, you're not alone. When you take oral chemo, well, you're all alone at home. We take our little tablets and everything, and knowing that there's someone there is important (P11) - I was very touched, he told me if you have a problem at any time, never hesitate to call me (P14) - My GP who opened the door for me, who said if you really have any questions, concerns, you call me (P2) |
Treatment-related factors
Regarding treatment-related factors, three themes emerged: tolerance of treatment, simplicity of treatment and difficulties with treatment.
Fourteen patients mentioned the tolerance of the treatment. Most patients mentioned toxicity and adverse effects induced by the treatment: palpebral oedema, digestive disorders, hand-foot syndrome, and alopecia. This was the theme most often mentioned by the patients interviewed.
Twelve patients mentioned the simplicity of the treatment, often compared to intravenous treatment: "(...) it's still less restrictive to swallow tablets than if I had to come twice, three times a week" or "a capsule that I used to combine with a glass of water, I don't know, there's more misery. There is more physical interaction that can lead to a feeling of pain. One patient mentioned a beneficial gain in autonomy for the psychic part of the adherence process: "You do your treatment yourself. I already think that on a mental level it is better" and others mentioned a feeling of freedom: "if I move, I can take the pack of medicines with me".
Finally, 7 patients mentioned difficulties or constraints in following this treatment, such as the fear of forgetting, the large size of the tablets and the way in which they are taken: "waiting 30 minutes can be a constraint". The emblematic verbatims concerning factors related to the treatment are presented in Table 3.
Table 3
Emblematic verbatims concerning treatment-related factors
Categories | Themes (number of quotes) | Selected verbatims |
Treatment factors | Tolerance of traitment (14/17) | - I feel it's weighing on my eyes and it's a pain in the ass in the workplace because when I get to work it doesn't look like I'm awake, although I am but it makes my face look a bit worse (P3) - If you like, I'm so sore in both feet that I can't do the activities I used to do because while I was still sick, I used to ride an electric bike (laughs) and walk, I used to do things to maintain my body. Now I'm reduced to the sofa and the remote control. And that's starting to wear me out... (P8) - I suffer from it as something a bit disabling. Compared to the expectations I have of living a life of my age without too many problems, but I think that these drugs, this particular drug, was creating a number of problems for me (P14) - I started losing my hair and eyelashes. And that was dramatic. In fact, I didn't recognize myself. That's what I told the psychologist. It was shocking because what disturbed me the most was not recognizing myself because it made my eyes bulge and it completely depressed me. I said, but it's not possible, it's not me (P17) |
Simplicity of treatment (12/17) | Autonomy : - You do your treatment yourself. I already think that on a mental level it is better (P4) Comparison of intravenous chemotherapies : - If it has the same effect as the infusion, then I prefer to swallow four tablets in the morning and evening (P2) - Well, the advantage is that, if I tell you, it's to be at home or to be in one's environment. it's still less restrictive to swallow tablets than if I had to come twice, three times a week (P2) - The day before, before coming to the appointment, I explained to the person I was with, it's crazy, it would be great if this thing could be made into a medicine to be swallowed, because with the medicine that we swallow compared to many other things in the medical system. It seems ... It's a simple and painless procedure (P1) - A capsule that I used to combine with a glass of water, I don't know, there's more misery. There is more physical interaction that can lead to a feeling of pain (P1) Freedom - If I move, I can take the medicine pack with me (P1) - Well, the fact that it's under medication and not an injection. It's more, it's practical, you can travel with these drugs (P10) - Today, in my everyday life, I don't feel like I'm taking a treatment, I do sport if I feel like it. I go to parties with friends. I work completely, normally (P3) |
Difficulties with treatment (7/17) | Fear of forgetting : - It's more like forgetting it, but without doing it on purpose, that is to say that, little by little, as the three weeks go by, you feel that you're coming back to yourself in normal mode. So, it's more a case of forgetting, or at least I'm not a person who is used to taking medication. You really have to be assiduous because if it's someone who's absent-minded ... it's not going to work (P1) Galenic : - When I saw the size at the beginning, I said to myself ... then you really have to take the time to swallow. Because for the first time, I wanted to swallow everything in one go, one after the other, and then I had a bit of trouble getting through (P2) - I say to myself, well, they're quite big and it's all very simple, in general, it follows a medical course, we've been through quite a lot and the apprehension of thinking if I swallow it wrong, well, it's big and it's stupid, but we're still quite anxious about the slightest little thing and the fact that it's big isn't... (P1) How to take : - Waiting 30 minutes can be a constraint (P2) |
Patients' representations and pathways related factors
Regarding the factors of adherence related to the patients' representations and pathways, many themes were identified: representations of medicines, internal resources, external resources, previous experiences with medicines, emotions felt, perceived benefits of treatment and help with the taking.
Five patients reported to us on the representations they had of medicines in general. Some of them had rather positive representations, based on previous experiences, and others rather negative: "it is something unnatural for me, worked, chemical".
The theme of internal resources was mentioned by 6 patients. We identified 3 sub-themes which are the commitment made at the time of initiation of treatment: "you really have to commit yourself to something, it's not a joke (...)", the fluctuation of motivation evoked as a "fed up" with the routine and the side effects and finally self-esteem with the notion of fighting against the disease by fighting.
Seven patients mentioned their external resources. Several patients mentioned their family and social environment as playing a beneficial role in medication adherence, while others spontaneously mentioned negative beliefs about medication: "but I'm not a fan of using medication. And I have a wife who encourages me not to be a fanatic at all and who would rather I was organic than take the things, you know in alternative medicine". Some patients also reported using alternative and complementary medicines or supportive care such as meditation, breathing sessions, acupuncture and consultations with a psychologist or magnetist.
Six patients mentioned previous experiences of family and friends with medication, or personal experiences: "a medication that obviously, it seems, was not very, very good and caused me heart problems".
Eleven patients told us about their emotions when they started the treatment: relief for some, seen as a favourable alternative to treatment with intravenous chemotherapy, but fears and anxieties for others, often linked to the side effects mentioned and the loss of quality of life: "it was not even the fact of swallowing the drugs that posed a problem for me, it was the side effects and I was afraid of losing my hair" or "(...) it bothered me a lot at the beginning to know whether I would be able to continue to do sport tomorrow, to how to put it, evenings out with friends, aperitifs, alcohol and all that, so there were a lot of questions, a lot of apprehension at the beginning before starting this medication". One patient spoke of shame: "at the beginning I didn't talk about it much because right away people were like: oh poor guy, oh all that”.
The perception of the benefits of the treatment by the patient was mentioned by 8 patients: "(...) the tumour has halved, so I think it was the right drug and I did well to take it".
Finally, 6 patients told us about techniques to help them take their medication: timer, annotation on the back of the pack. Emblematic verbatims concerning patient-related factors are presented in Table 4.
Table 4
Emblematic verbatims concerning factors related to patients' representations and pathways
Categories | Themes (number of quotes) | Selected verbatims |
Patient’s representations and pathways factors | Representation of medicines (5/17) | - It would be wrong of me to criticize medicines as they have saved me more than once (P8) - It is something unnatural for me, worked, chemical (P1) - Knowing that every drug is said to cure you on the one hand, and destroy you on the other (P8) |
Internal resources (6/17) | Commitment - After they give me a treatment, I do that, I am assiduous and I am stupid and disciplined, they give me, I do that (P2) - You really have to commit to something and it's not a joke, it's not I take it and then I don't take it because I don't want to take it, no, it's I take it and I don't even think about it and I know I have to take it and that's it. There is a protocol to follow and I do it (P2) - I never gave myself the choice to say to myself: do I take it or not? That's how it was, I had to take it (P3) - I can't see myself not obeying this kind of treatment. I don't understand why people can't take it seriously (P17) Fluctuation of motivation - We know that fighting and confidence is 50% or more than that. If you don't have that, you don't have a chance for drugs (P6) - Well, I've reached such a state if you like ... at the moment, it's pissing me off, but if it's a stage to get through, so be it (P8) - I'm fed up, maybe just fed up, fed up with the routine and the suffering I think. There were times when I had strong side effects (P6) Self-esteem - I trust the doctor, I trust myself, so I continue to fight and the straight line has been drawn, so let's go (P6) - I think that even before the disease, at the moment, I have the character to fight, so I fight, and I don't go looking (P6) |
External resources (7/17) | Complementary alternative medicine, supportive care - What I do, I tell you, is more meditations, relaxation, things like that, but more for the mind (P2) - I am being followed by a psychologist. Because what happened to me was a lot. It was violent, brutal, so I needed to understand the reasons why. So I see her every two weeks at the moment (P11) - I am very suspicious now of these alternative medicines actually (P17) Social ressources - We go for it and I'm well supported by my family too. My family plays a role too (P6) Negative belief in medication by family and friends - But I'm not a fan of using medication. And I have a wife who encourages me not to be a fanatic at all and who would rather I was organic than take the things, you know in alternative medicine (P14) - On my father's side, they are people who (laughs) well, they prefer to treat themselves with plants ... Well, they take medication like me, well if they have a treatment to follow, they have to, but they are a bit, well, they are more reticent than me (P2) |
Previous experiences with medicines (6/17) | Bad personal experiences - A medication that obviously, it seems, was not very, very good and caused me heart problems (P14) - I developed a side effect apparently that was not necessarily well known (P17) Experiences of the entourage - My mum has diabetes and other pathologies. I've seen her swallow a lot of medicine since I was little and that... it's like a rejection but it's true that it's always shocked me (P2) - Another thing that made me decide to accept it was, I thought about my mum: she has no treatment. We can't offer her anything. And me, if they offered me something, I couldn't see myself uh ... (P11) - I know someone who also has the same problem as me 5 years ago. And she is doing very well (P11) |
Emotions felt (11/17) | Relief - I was relieved of the medication and oral part because when you hear the treatment you may have to deal with, these are words that remain quite strong, heavy, traumatic or scary (P1) - So I was relieved that he might have a solution, an alternative to chemo, and I was satisfied that he continued because if I didn't want to do chemo, because I didn't want to do it, I didn't want to do it anymore because it had been horrible (P8) - It was a relief to know that it was in pills (P2) Fears/anxiety - It was not even the fact of swallowing the drugs that posed a problem for me, it was the side effects and I was afraid of losing my hair (P2) - At first, it's a bit scary when you see all the possible side effects. It's true that it makes you think 'oh' (P12) - The day before I was told about it or the day before, everything was fine, so, um, it was also a question of knowing whether it would change my daily life. it bothered me a lot at the beginning to know whether I would be able to continue to do sport tomorrow, to how to put it, evenings out with friends, aperitifs, alcohol and all that, so there were a lot of questions, a lot of apprehension at the beginning before starting this medication (P3) - The apprehension was mainly, um, I didn't want my daily life to be disrupted, so not too much. And work too, because work was important to me, so um ... I heard that there were other people who were off work. It's clearly something I didn't want (P3) - I was starting to feel apprehensive and so much so that I said to myself, 'Gosh, what have I got myself into? Yes, why did I agree to what. And then, yeah, at the beginning of each cycle, the day before, I'm not in the mood (P11) - I'm actually afraid of the side effects. Much more than whether it works or not. I'm afraid of the side effects that might diminish my quality of life actually, that might prevent me from living normally (P17) Shame/guilt - "At the beginning I didn't talk about it much because right away people were like: oh poor guy, oh all that (P3) - They're afraid, it's a big word right away, tumors, cancer, people, especially at my age, it's grandma who's 80 years’ old who talks about it, well we say to ourselves that's nature, that's how it is (laughs). I'm a bit younger, so people tend to be a bit ... I can see that it's hard for others and I don't want people to feel sorry for me, so that's why, especially as I don't need it (P3) |
Perceived benefits of treatment (8/17) | - I was saying to Dr X earlier, what's harder for me is that I don't see the purpose (P11) - That said, I recognize that he also does things that are good for me. We had the results just now, it's not just anything (P14) - There is no improvement but there is no deterioration, so the treatment we give you stabilizes the disease well (P16) - The important thing is to see if it works and the tumor has halved, so I think it was the right drug and I did well to take it (P3) |
Help with the taking (6/17) | - I set a 30-minute timer in the middle of the meal, or at the end of the meal (P7) - I put a timer on anyway, because you have to take them 30 minutes after the meal. I have a timer, so I look at the time to say to myself, well, at such and such a time, because it's certain that you can quickly go and do something else and then you forget, that's why I say to you, you really have to be square. - I write down the initials of the days of the week on the back of the plate so that I can remember whether I have taken it or not (P3) |