Table 2.
Experiences with the mCRC PtDA v1.0 of patients (P) and medical oncologists (MO).
| Determinants MIDI model⁎ | Patients (P)# | Medical oncologists (MOs)# |
|---|---|---|
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MOs find the instructions for using the PtDA clear. The method of use varies, however. The consultation sheet itself is explained to patients, but patients are not pointed towards the online PtDA as a matter of course. There is not always a time-out and the PtDA does not always come up in follow-up conversations. | |
| “The information sheet is not overwhelming, but it is important that the doctor guides you through the content.” (P 2) “I found my doctor's explanation with that sheet very helpful, and I appreciated that I had a say in the treatment choice. At the end of the consultation, I asked my doctor what treatment she thought was best for me, and my wife and I agreed with her recommendation. Although she mentioned the option to use the website, I decided not to because I prefer to take things as they come.” (P 3) “No, my doctor didn't say that I could use an online PtDA. I did get that leaflet, but I didn't log in to a website.” (P 6) | “I don't often use the summary in practice, but I think I'll have to push patients a bit more towards that online PtDA.” (MO 2) “I discuss everything, tick the suitable treatment options, refer them to the website and say we'll come back to it in the next consultation.” (MO 5) “If it's straightforward, they make a choice right away during the first appointment. In practice, people don't want to think long about it at all; they want to start treatment as soon as possible.” (MO 6) | |
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Some texts in the online PtDA are considered outdated as a result of the new treatment guideline. MOs indicate that the effect on physical performance, as mentioned on the consultation sheet, is not correct for combinations of drugs. MOs emphasize that regular updates of content are essential. | |
| “The PtDA gives a summary and shows the correct side effects. That's also been my experience.” (P 2) | “The consultation sheet shows the effect on physical performance for each individual drug, but that's not correct when combining drugs.” (MO 6) | |
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MOs feel that there is not enough information about biomarkers, study participation and differences in treatment option effectiveness in the PtDA. Patients need more information about treatment effectiveness for an informed choice, and desired information on the biomarkers, experimental trials, recommendations on lifestyle and diet, manageability of side effects, as well as references to reliable sources. | |
| “I miss having an explanation about how many courses someone gets on average. And what it gives you, in terms of time… and how side effects can be partially managed by reducing the dosage, for example.” (P 1) “I was a little bit afraid that I was going to pick based on side effects and not based on the effect of the treatment on my cancer.” (P 5) | “You could add something about the possibility of experimental treatment. Because some of the people that have no regular treatment options left, are still in very good shape.” (MO 5) “I think that you need to emphasize what exactly a treatment adds, for example by listing differences in effectiveness between treatments without showing exact numbers.” (MO 6) | |
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Choosing treatment is considered complex in general due to uncertainty about prognosis and side effects. Some MOs think it is unhelpful that the consultation sheet presents treatment options that are not a good option for every patient. They would prefer a more personalized or hospital specific consultation sheet. Patients think the names of the medications are difficult, but the abbreviations, texts, and pictures in the online PtDA are easy to understand. At first, the PtDA offers a lot of information, however the consultation sheet is useful as a reference guide and the online PtDA can be read in stages. | |
| “In my opinion, not telling the patient that there are treatments unavailable to you due to a certain mutation is not an option. You will hear about those treatments anyway.” (P 2) “You can pick the items you want to read. The latter is valuable because I didn't want to know everything. (P 3) “The information was easy to understand, but it's still difficult to make the choice all by yourself. I mean, you can say it would be awful to lose your hair – but what are you going to do about that cancer then?” (P 4) “When you come back from talking to the doctor, you're so tired… So, you put it all aside and think it can be dealt with later.” (P 6) | “If you also have to cover all kinds of nonsensical treatment options, it's too much information, too much noise.” (MO 3) “I'd like to see a centre based, individualized PtDA. Because we never use FOLFOX, for example, I would remove it entirely.” (MO 5) “I struggled a little with the best way to use it and at what point in the conversation. Putting the consultation sheet on the table straight away didn't work in my experience; now I start the conversation organically and bring it out when visual support is needed.” (MO 7) | |
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Whether their practices need to be adjusted depends on the MOs consultation style and the clinical care pathway. A time-out is unusual in most hospitals, but easier to implement in some than others depending on how common it is to have a second moment of contact with a patient before starting treatment. MOs state that not all patients want to be involved in the decision making nor want to further consider options at home; they ask the doctor what to do and/or want to start treatment soon. | |
| [Only applicable to MOs] | “Some patients are clear about their wishes and do not need a second consultation. Other than that, the PtDA complemented the way I work, so not much had to change.” (MO 2) “The PtDA didn't add anything to my working method, except that I had to adapt… But I sincerely believe that it would benefit many doctors.” (MO 3) “It's convenient that we have to wait a week for the DPD result anyways, so you can use that time to let the patient reflect.” (MO 5) “The PtDA required some changes in my communication techniques, but once I got that hang of that, it was a great asset. […] The PtDA forces you to take a time-out. I also started doing that more in patients with other types of cancer.” (MO 7) | |
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Patients feel it would be useful if the MO read their answers to the questions in the online PtDA, or receive their PtDA summary, beforehand. MOs notice effects of using the PtDA. | |
| “I think it would be nice if your doctor has already read your answers beforehand. So, you can dive deeper into it straight away.” (P 2) | “I wasn't a fan of PtDAs: I thought I don't need them because I already work that way. But we decided to do the pilot and it made me very enthusiastic.” (MO 5) | |
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Almost all MOs confirmed that mCRC patients have a choice. They also feel it is relevant that the PtDA subtly encourages people to think about the end of life. Some MOs think the PtDA (mostly the online part) is not relevant for everyone, especially because some patients do not want to have an active role in decision making. Patients feel it is useful to think about what is important to them and to share that with their MO. The need to have a say in treatment choices varies with the patient. | |
| “Assessing the information and deciding what's important to you is a very personal process. After using the online PtDA I had a clear understanding of my thoughts on the matter.” (P 1) “Listen: she's the oncologist and should decide what to do, but I liked being able to do that together. Look together at what would be good for me and when.” (P 3) “Making a choice isn't something I really see as an option: she's the specialist and has loads of experience and I trust that.” (P 4) | “I still sometimes notice, with older patients in particular, that they have difficulty with the concept of shared decision-making.” (MO 1) “In the past, patients didn't have so many choices but now you have several at any point in treatment.” (MO 5) “People in this region really have no idea and they say, ‘You're the doctor, you're the one who's trained for it, so you decide.’” (MO 6) “With the PtDA patients feel more in control and stand behind their choices. That's important for coping. Besides, the consultation sheet really is a concise reminder.” (MO 7) | |
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MOs feel that the PtDA is a good conversation aid. The PtDA improves joint decision-making, helps give the patients more control and makes it easier to discuss the do-not-treat option, future treatment choices and the last stage of life. Moreover, some MOs stated that the PtDA saves time once they have got the hang of the method. Patients say they feel engaged and more aware of their situation. The PtDA helps them structure their thoughts and talk to their doctor about what really matters. Moreover, the PtDA also helps those close to them and offers transparency. Disadvantages mentioned by some of the MOs were that they had to adapt their working methods and that explaining treatment options that they felt were not (yet) relevant was undesirable. Patients listed the disadvantages as being that the questions in the decision aid can be confrontational, and that receiving more information than desired by the patient can be a source of worry. | |
| “My wife and I came prepared, and we were able to dive straight into the deep end with my doctor.” (P 1) “For trust, it's good that all treatment options are listed transparently. […] And that answering those questions makes you a human being to your doctor.” (P 2) “I skipped that question about living as pleasantly as possible versus living as long as possible, but it is a question that needs to be asked.” (P 4) “It's nice in a way that you get more explanation, but on the other hand it also makes you worry more. I'd rather be given a single sheet of paper saying what the doctor wants to do.” (P 6) | “With the PtDA, you can easily explain the options, including the option of doing nothing. […] It helps reach a joint decision. And giving the patients some control helps throughout the treatment pathway.” (MO 2) “It gives some continuity: in subsequent treatment choices, you are back at the table with the same information. On top of that, it helps the patient see that it can't go on forever, and that helps me too.” (MO 4) “I've only used it to a limited extent, because the times I thought about it, I then decided I shouldn't because it had to be the most conservative treatment anyway.” (MO 6) | |
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The PtDA makes it clear that there are options and gives patients tools to help them decide. Most MOs do not get the impression that patients make different choices when using the decision aid; it's rather a case of them standing more squarely behind the choice made. | |
| “This one was the best, but I could also choose the one where your hair falls out. I could have said I'd rather have my hair fall out than have rashes and itching all over my body.” (P 6) | “The other day, I had an eighty-year-old patient who only realized after going through the online PtDA that he wasn't going to get better.” (MO 2) “The patient's initial idea isn't necessarily changed by the PtDA; if they feel more in control, they're more likely to continue the treatment. And if a patient picks a less severe treatment themselves, they're also less surprised when it stops working; conversely, if they decide to bite the bullet, they won't blame me for it being tough.” (MO 7) | |
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The way MOs and patients perceived their tasks varies. There are MOs who say they leave the choice to the patient as much as possible and others who believe that a patient cannot make the best treatment choice themselves. The same goes for patients: some leave the choice up to the doctor and others prefer to decide for themselves. Assistance from the doctor in joint decision-making is not always highlighted and deserves attention in the implementation. Not all doctors see it as their job to tell patients about treatment options they do not think are good options or to discuss the summary when the treatment choice has already been made. | |
| “I think that the doctor should be in control. If you create the impression that the patient must decide, that creates too much responsibility and confusion.” (P 1) | “The PtDA is an improvement in quality of care. Shared decision making, modern times. You should be a part of that.” (MO 2) “I always try to leave the decision with the patient: You have the final say about what it's going to be. People should always have a choice.” (MO 6) | |
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The consultation sheet is discussed together during the consultation. It is not standard for a patient and/or those close to them to log into the online PtDA. Patients infrequently bring the summary along to the next consultation. Both logging in and using the summary seem to depend partly on what the MO says about doing so. | |
| “I did still go through the PtDA out of curiosity but didn't fill it out in detail because we'd actually already made up our minds.” (P 2) “No, we didn't bring that summary along. It might well have been discussed over the phone, though – I don't remember.” (P 4) | “Patients often come back with that consultation sheet off their own bat later in the treatment process.” (MO 2) “I always recommend logging in and I actively point them towards the website. I reckon that does help: if you just point out that they can login, then maybe people won't do it.” (MO 5) “I tell them to bring the summary with them if they want me to be able to see what they've filled in. Less than half the patients bring it along, but I don't consider that a problem because I prefer it anyway when they just tell me.” (MO 7) | |
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The PtDA lets those closest to the patient offer their support. On top of that, the PtDA is also a nice reference guide for them. | |
| NB: only applicable to P | After using the online PtDA, my spouse and I were well-prepared and able to discuss the things that really mattered.” (P 1) “I showed the sheet to my daughter, and she looked everything up and explained it to our son. They are better at using the internet.” (P 3) “My wife was with me at the first consultation, and she explained everything to me using the sheet afterwards.” (P 4) | |
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The PtDA is usually used by multiple MOs at the same hospital. Sometimes not every MO continues use. Nurses can also be the initiator to implement the PtDA in an oncology department rather than an MO. | |
| NB: only applicable to MO | “I was the only one who started using the PtDA at first with any enthusiasm.” (MO 4) “My colleague uses it too, every time the course of treatment changes.” (MO 5) “The pictures that are on the sheet aren't a nuisance, but I never use them. Though I do know that some of my colleagues do.” (MO 7) “At the time, it was a nurse who introduced the PtDA at our hospital. We continued with it because we felt the pilot worked well.” (MO 7) | |
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Most MOs think they already handle joint decision-making properly, but the quotes show that assisting the patients in weighing up the pros and cons, particularly to turn an initial treatment preference into an informed treatment preference, is not always routine yet. Some patients feel they cannot participate in decision-making because they don't have the knowledge, or that the responsibility of having to choose leads to them worrying about making the wrong choice. This again revealed that patients do not feel to have received enough information about the effects of treatment. | |
| “It would be bad if people are anxious about all kinds of side effects that may not happen and then make the wrong choice.” (P 1) “I sometimes fear that I will be seen as too critical. It's not that I don't trust the treatment I'm offered, but still, you wonder what else is out there.” (P 2) “As a patient, you can't really choose because you don't know all the ins and outs. A doctor's been trained for that, though. I could have said, ‘I'd rather not have my hair fall out’, but she thought the one I'm getting now was the best for me, so then I have to listen to that of course. The point is that it should also have an effect. […] Maybe we trust the doctors too much. That might have something to do with our age.” (P 6) | “I think the process of shared decision-making does go reasonably well but I'm also aware of where it can be improved.” (MO 1) “I always remind myself that the patient must be in control, and I try to provide people with the best possible information. But sometimes, as a doctor, you must be honest when you feel that the medical side no longer has any point for someone; that is also shared decision-making.” (MO 2) “I think I am very good at shared decision-making. I may be someone who comes across as overwhelmingly direct. Almost everyone appreciates that, but some people may be a little too directed for their liking. With those patients I consciously try to plan that second appointment.” (MO 4) | |
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The annual subscription fees that are paid for the PtDA are used to update content and send feedback on PtDA use and anonymous patient feedback to medical oncologists. Budget needs to be made available by the medical oncologists/the hospital itself. Current users believe that the costs are reasonable, however the costs might be a barrier for hospitals to implement the PtDA, especially when they would like to implement multiple PtDAs. | |
| NB: only applicable to MO | “I reckon the costs weigh up okay against the quality you offer with the PtDA. If this lets them make better choices, I think that you'll save money in turn that way, perhaps also by them experiencing fewer side effects with a treatment that really suits them.” (MO 2) “If you want it to be used as often as possible in oncology in the Netherlands, it is better if no financial compensation is required. Because that, by definition, puts up barriers.” (MO 4) | |
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Using the PtDA does not seem to cost oncologists more time, although that is sometimes the expectation beforehand. Busy schedules can be a barrier to implement the PtDA or the time-out and change usual workflow. | |
| NB: only applicable to MO | “I didn't always get around to including the PtDA, given the hectic pace of such a consultation, but my consultations didn't take any longer when I did use it.” (MO 3) “The tool saves me time because people also know what is coming next. They sometimes even say it themselves: right, so we're moving on to…” (MO 5) | |
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The PtDA sometimes gets forgotten if it is not readily available in the consultation room. Internet access is a limiting factor for some patients to use the online PtDA. | |
| NB: only applicable to MO | “There are people who don't have internet and therefore don't use the online PtDA, but they do benefit from the pictures and the consultation sheet.” (MO 5) “Because I was in a variety of outpatient clinic exam rooms and see a range of cancers, I didn't always have that consultation sheet to hand.” (MO 6) | |
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A coordinator is appointed at start-up but may not retain an active role after implementation. | |
| NB: only applicable to MO | “One of my colleagues was the coordinator; they implemented the PtDA at the time. It is just an assumption that she then took it further.” (MO 2) | |
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Some doctors receive feedback on the use of the PtDA. This feedback is not always shared or discussed with the whole team. | |
| NB: only applicable to MO | “I get these overviews and look at how many PtDAs I've handed out. My colleagues don't get those.” (MO 2) | |
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Some information in the PtDA was outdated as a result of new research findings. The PtDA would be more in sync with recommendations in the newly published mCRC guideline by including information on molecular diagnostics and new treatment options. MOs agreed that only available and reimbursed diagnostics and treatments should be featured in the PtDA. | |
| NB: only applicable to MO | “Patients are often confused about mutation analysis and the use of agents that work with antibodies. So, explaining that visually in the new version would help.” (MO 4) | |
⁎
Definitions of determinants used, based on the MIDI model [23]; Procedural clarity: ‘the extent to which the procedure to use the PtDA is clear’, correctness: ‘the extent to which the information in the PtDA is correct’, completeness: ‘the extent to which the information in the PtDA is complete’, complexity: ‘the extent to which the PtDA is complex to use’, compatibility: ‘the extent to which the PtDA is compatible with work methods’, observability: ‘the extent to which the effects of the PtDA are visible’, relevance: ‘the extent to which the PtDA is relevant for the patient’, personal benefits/drawbacks: ‘benefits/drawbacks of PtDA use’, outcome expectations: ‘outcome expectations of users’, professional obligation: ‘the degree to which responsibility is felt to use the PtDA’, patient cooperation: ‘the extent to which the patient cooperates with PtDA use’, social support: ‘support experiences to use the PtDA’, descriptive and subjective norm: ‘PtDA use by- and motivation of co-workers’, self-efficacy: ‘degree to which the user believes he or she applies shared decision making (using the PtDA)’, financial resources: ‘availability of financial resources needed to use the PtDA’, time (available): ‘availability of time to use the PtDA’, material resources: ‘availability of recourses necessary for the use of the PtDA’, coordinator: ‘the presence of one or more persons responsible for coordinating use’, performance feedback: ‘received feedback on implementation progress’, adherence to clinical guidelines: ‘adherence of the PtDA to the new guideline’.
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Note that this table is limited to the 13 interviews with participants with user experience; all quotes have been translated from Dutch to English.