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Table 2 Selected stakeholders’ original quotes representative of the addressed topics and views during the interviews

From: Experiences and views of different key stakeholders on the feasibility of treating cancer-related fatigue

 Stakeholders original quotes
Assessment and ReportingRadiation oncologist: “From my view, we do not ask/ nor use a systematic assessment [of CRF] at the moment, no quantification”.
Oncologist: “Everyone has their own technique what is been asked and how you ask. And then, it is difficult asking things only to record it but not having a solution for it”.
Psycho-oncologist: “The problem with CRF is that it does not appear at a certain point in time … it can happen at any point during the course [of cancer disease]. And we do not know 100%, as far as I know, what the causes are … and which factors play a role in it.”
Psycho-oncologist: “The big challenge is to distinguish [CRF] from other psychiatric diseases, above all from depression, but also from anxiety. That is a big diagnostic and therapeutic challenge”.
Nurse expert: “You could delegate it to the nurses because the medical doctors always have so little time. I mean the assessment [of CRF] … if you had an algorithm of what data, clinical parameters and so on to gather … that could be an interesting job for an advanced nursing practitioner”.
Radiation-oncologist: “That [addressing fatigue symptoms] is not in the foreground in the patients. Surviving is in the foreground in the patients who are really in the middle of a cancer therapy. Then, the severe side effects, acute side effects that come from radiation. So, fatigue does not occupy a big space neither in the informative consultation nor in the consciousness of the patient”.
TreatabilityOncologist: “It is a bit frustrating. You try to help, trying to improve some things, but mostly, time must just pass by and it gets a little better in the end. We don’t have good therapy options available.”
Radiation-oncologist: “We do not really have a specific systematic therapy of CRF within our clinic treatment guidelines … .nor do we have a specific offer [for the patients].”
Nurse expert: “Concerning therapy strategies, I see a bit a split up between physical, emotional, mental and I would also add spiritual and of course complementary methods … ”
Nurse expert: “People are telling me that they cannot trust their own body anymore because they suffer from cancer and did not notice it. Afterwards, the fatigue and exhaustion kick in because of the therapy. And then there are the surgeries, being disfigured, not being able to find yourself beautiful anymore. Feeling a distance to their own body, looking from the outside to the own body and saying, this is someone else. I don’t want anything to do with this …. And then you should return to life and it does not work … You cannot get out of your own way forever … if you want to go for a swim or the hair is grey all of a sudden. It is really important that the people get back these abilities, that they are able to influence their acts and experiences … ”
Patient family member: “… it is searching for a dialogue and rediscovering the awareness of the own body … sensing yourself … and trying to create a sense of achievement together … ”
Patient: “How do you fight fatigue?...If you are in it, you cannot make it. The exhaustion makes it impossible to move … and then, there is the pain … finally, you resign, and then the spiral spins down fast … when I am inside the fatigue or in this vicious circle, I do not think that I am capable of anything … It would be important to begin early in the therapy with physiotherapy to avoid physical imbalances and physical decline … ”
AttitudePatient family member: “Something that you can do by yourself. Nothing that is additionally inflicted upon you or is being done to you from the outside … Something that I can contribute to the whole. I believe that this should lead to a certain kind of self-confidence, that you are able to do something and that you can do something good to yourself in this time.”
Oncologist: “Empowerment. Keep them in the driver seat.”
Nurse expert: “Individualizing and prioritizing … for [treating] very exhausted people … when you do individualize, you automatically determine priorities … ”
Patient: “After the disease, I would have wished that the hospital told me what I can do against the fatigue … I googled a bit, but in this situation, you are still so tired and everything needs so much energy. Life alone costs so much energy … you are more reserved, and you are not in the mood to try things. I would have wished to receive some addresses or similar things … something where I would have been accompanied … how do I cope with … the whole fatigue … and what can I do against it?...You are so tired and without energy that you are happy when others decide for you … because it has to do with effort … I would have wished different options and offers open to choose from what I wanted … ”
Patient: “After the active cancer treatment … you are discharged, then you have to fend for yourself … you are pretty much left alone”.
Oncologist: “Certain cancer patients that have never learned to care for themselves … you cannot expect them to jump on and say: Yay, now I do something for myself! … They don’t turn around 180 degrees and act completely different than their 50, 60 years before … ”
Infrastructure, time-management, costs and affordabilityOncologist: “If we want it to be done [establishing a CRF treatment program], we need a point of care. That means, on the one hand, the medical doctor and, on the other hand, the nurses who are near the patients … It means you need rooms within the clinic, as near as possible, as visible as possible … in an ideal situation … We are way too disparate … people are too far away … The patients have to gather together different offers. That is not always easy. It is like in the supermarket where they put the chocolate things before the cash desk. You consume of what you know to exist. You seduce by being there.”
Oncologist: “The information has to be done by the point of care … I say by the nurses first … because they have a longer exposure to the patients … there are other points of contacts where topics can be addressed that usually fall short...The information also has to be there, ideally at a desk where you can get the information or patients can ask about while they are waiting … or while passing by when leaving [the hospital] … If I could build a hospital, I would want a shopping center … with psycho-oncology, social services … cancer league … a welcome desk with brochures and information material, a wigmaker … and so on and so on … ”
Nurse expert: “They [cancer patients] often have some physiotherapy … or a psycho-oncological consultation or a follow up or the baby-sitting that didn’t work and then another appointment follows and another and another and another. Or they have long ways … It is not to be underestimated, because the survivors are tired. And they have cognitive dysfunctions and they are exhausted afterwards and know, when the concentration [of an appointment or intervention] is behind them, they have consumed up all their energy for the whole day”.
Radiation-oncologist: “After the motto, more is better, I do not believe in this. I do not consider it as useful applying five different methods to attack CRF...One method for sure. Two, ok. I would not expect the patients to do more.”
Patient: “Maybe the psycho-education would have been feasible if you say, ok, today after or before the chemo you have another hour. How much outcome you would have in doing it that way, I don’t know. How receptive you would be, also cognitively. This is another thing that you are not receptive at all. Maybe it [the treatment program] is feasible if it is integrated into the proceedings of the hospital … ”
Nurse expert: “Maybe we could create an offer for people who do not live on the sunny side of life. Some foundation or donation accounts … to support something.” … “I would connect it to the indication...In case of this diagnoses maybe one part would be funded. That would be useful … and then probably more evidence is needed.”
Oncologist: “There is this consumerism. I think, it would be good if the people must pay a bit more because that causes another identification.”
Integrative approachNurse expert: “They [the patients] really came and asked, what can we do? Additionally, complementary? What offers are there? What would help me?”
Psycho-oncologist: “Personally, I really like complementary medicine, because it … offers something for the patients that helps them. Personally, I prefer that patients who suffer from psychological problems, who are stressed, that they learn something active, how they can create their life themselves again … And patients love complementary medicine anyway because they feel that it is something good for them and that it helps them and does not harm.”
Nurse-expert: “We have some [nurses] who are good in the complementary medicine approaches, who are vocationally educated in it. We also refer [patients] to your clinic [Institute for complementary and integrative medicine]. We often do this. I think it is strongly growing … there is a tendency. Now, it is more in the heads of the medical doctors and the nurses.”
Patient: “We, the patients, have to initiate and build it. There is no net of connections or networking among the medical doctors yet. And this is something where both sides could benefit from one another, and in the end, the patient has a huge benefit from it. I really cannot understand why they don’t do it.”
Nurse expert: “What I think is that it is mostly a single element [from a complementary medicine approach]. Therefore, it is not a package where you could choose something and that is harmonized to one another. It is rather that the patients try something because he has heard of it or someone recommended it. He just tries and either it is good or not. It is complex. I think, most [patients] try something.”
Nurse expert: “We consider ourselves as scientists, natural scientists … I tell [my patients] that my belief system differs from these [complementary medicine approaches], but that I am – of course – full of respect and acceptance for these methods as long they don’t harm themselves.”