Sample
Overall, 22 stakeholders were interviewed (see Table 1).
Table 1
Stakeholder characteristics
Stakeholder groups | Total (n = 22) | Gender | N | Mean Age (Range) |
Patients | 9 | Female | 7 | 55 (35–65) |
Male | 2 |
Patient’s family member | 1 | Male | 1 | 33 |
Health care providers | 12 | Female | 6 | 49 (34–64) |
Male | 6 |
| oncologists | | 4 |
| radiation oncologist | | 1 |
| psycho-oncologist | | 1 |
| nurses/nurse experts | | 5 |
| representative of a local Swiss Cancer League | | 1 |
With the health care providers, we conducted nine face-to-face interviews and one focus group consisting of three nurses and nurse experts. The health care providers estimated that approximately 57% (range 10%˗100%) of their cancer patients experience CRF.
With the patients, we conducted two face-to-face interviews and one focus group with seven participants.
The patients experienced different types of cancer and were in different stages of treatment after their diagnosis. They all combined standard cancer therapy and CM treatments. Between the patients’ cancer diagnoses and their CRF diagnoses, the average timespan was ten months. In addition, a numeric rating scale with two questions was used to confirm the CRF diagnosis of the participating patients at the beginning of the project [18, 6]. For further details about the patients cancer characteristics see Canella et al. [6].
The stakeholder advisory board was formed out of the 22 stakeholders. The seven individual board members were interviewed face-to-face as stakeholders independent of the advisory board meetings [6].
Contextual factors related to the feasibility of treating CRF based on the experiences and views of the stakeholders in supportive care in hospital environments
The stakeholders referred to different main topics when talking about the feasibility of treating CRF: assessment, reporting and information; treatability; attitude and mindset; infrastructure, time-management, costs and affordability; and integrative approach.
Selected original quotes representative of the addressed topics and views during the interviews are presented in Table 2. In addition, all the terms in quotation marks indicate original quotes from the stakeholders.
Table 2
Selected stakeholders’ original quotes representative of the addressed topics and views during the interviews
| Stakeholders original quotes |
Assessment and Reporting | Radiation 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". |
Treatability | Oncologist: "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…" |
Attitude/Mindset | Patient 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 affordability | Oncologist: "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. 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 approach | Nurse 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." |
Assessment, reporting and information
In particular, the medical doctors, the nurses and nurse experts stressed the challenge of assessing CRF and asking their patients about CRF-related symptoms periodically. The interviewed health care providers usually did not use a standard diagnostic tool for assessing CRF. "Everyone had more or less an individual approach" (medical oncologist) to ask their patients about symptoms of CRF. It was a challenge for the health care providers to keep track of CRF in their patients because CRF can have multiple causes, can appear in very different stages of cancer and can differ in its clinical expression in the individual patients. The psycho-oncologist added that it is often difficult to differentiate between CRF and other psychological conditions, such as depression or anxiety. A nurse expert linked the topic of assessment and reporting with the observation that medical doctors are often too overburdened with the standard cancer therapy consultation to execute a systematic CRF assessment. She suggested that a systematic implementation of a standard diagnostic tool for CRF might be more feasible if an advanced nursing practitioner could take over that task from the medical doctors.
Some health care providers reported that their patients rarely addressed problems or symptoms of fatigue during the consultation because they were focused on surviving and on the more acute side effects of active cancer therapies.
Patients felt that they were not informed specifically enough about how to treat CRF. They felt like they had to search for treatment options on their own what was challenging while experiencing simultaneously CRF. They wished they could have been monitored for CRF throughout the active cancer therapy but especially after active treatment. The advisory board discussed when would be a good point in time to inform the patients about CRF. They agreed that cancer patients should be informed early after their diagnoses and reflected on the possibility of creating an online information tool for the patients.
Treatability
The health care providers often did not see good results when trying to treat CRF. They also mentioned that there was no specific treatment for CRF in their hospital at the time of the interview. It was a problem for the health care providers that CRF could not be treated with a single, simple and effective intervention, so they opted for interdisciplinary collaboration and an integrative treatment program when approaching the treatment of CRF. A nurse expert expressed the need for approaches at different levels, including the physical, emotional, mental and spiritual levels.
Many stakeholders also reflected on the goal of CRF treatment, which they saw as increasing the energy level of the patients, improving their quality of life and helping them adopt coping strategies. A nurse expert differentiated between patients in curative situations and patients in palliative situations. To her, the goal in palliative patients should be "coping" (nurse expert) and "managing their own energy levels" (nurse expert) throughout the day, whereas in a curative setting, the patients should aim to regain their energy mainly by exercising. Most stakeholders stressed that one of the most important goals is to provide patients with options that help them regain trust in their own bodies and in their abilities, as many cancer patients lose faith in their own bodies. For the stakeholders, this was also strongly linked with the topic of regaining self-efficacy. The stakeholders thought that this could be best achieved by exercising and by psychoeducation. However, it is a major challenge for CRF patients to become active on a regular basis because being active and experiencing CRF are contradictory in their nature. The stakeholders differed in their views on how to approach this challenge. Whereas some patients would have preferred personal coaching with an individual workout program, a few health care providers opted for group trainings tailored for CRF patients, with the focus not only on the financial and infrastructural feasibility but also on the possible benefits of the group setting, such as sharing similar diagnoses, exchanging experiences and motivating each other.
Attitude and mindset
The stakeholders agreed on the attitudes and mindsets of the patients and health care providers needed for a successful integrative CRF treatment program. The treatment approach should be patient-oriented, should focus on self-care options and should create possibilities for self-determination for the patients. According to the stakeholders, a patient-oriented approach is also needed to strengthen patients' self-efficacy and to overcome feelings of helplessness that often go along with experiencing a life-threatening disease such as cancer.
In particular, the nurses and nurse experts stressed that an individualized approach is needed, considering the patients' cultural and social backgrounds as well as their individual experiences with their cancer and with CRF. At the same time, to them, it is equally important to connect to the patients' resources and interests.
The patients totally agreed with the patient orientation, but at the same time, they wished to be simultaneously informed, monitored and accompanied by health care providers because they felt unable to act completely autonomously while experiencing deep exhaustion and fatigue. They often felt they were being left alone with their CRF, especially after active cancer treatment.
Some health care providers pointed out that an integrative approach and a focus on self-care often require a change in health behavior in the patient and that this is a serious challenge while experiencing cancer and CRF.
Infrastructure, time-management, costs and affordability
A multimodal approach to treat CRF is needed, and the health care providers talked about the consequences that come along with such an approach. First, hospitals are always short of manpower, infrastructure and time to meet all the different needs of individual patients. In addition, it is a challenge to coordinate the treatment between different departments and ensure the flow of information between all involved parties. Some stakeholders imagined a "shopping-center" (medical oncologist) or "drop-in-center" (medical oncologist) where the different treatments would be coordinated, monitored and located in the same building.
Normally, cancer patients have many appointments that can result in an overload of consultations and therapies. Consequently, most stakeholders opted for a prioritization of treatments – also based on the severity of CRF in the individual patient – and a focus on options that could be executed at home, such as exercising or acupressure. According to the stakeholders, prioritizing is even more important for CRF patients because they experienced these patients to be very restricted on all levels. Too many appointments limit the processing of information and interventions in CRF patients. Therefore, a good organization of the appointments is needed as well as locating therapies within a comfortable geographical distance from where the patients live. In addition, some stakeholders pointed to the challenge of coordinating work with an extensive treatment program, as is often the case in cancer patients.
The stakeholders agreed that the integrative treatment program would be most feasible if it would be fully covered by public health insurance. Admission into public health insurance usually requires standard diagnostic tools and evidence from good quality randomized controlled clinical trials for the interventions; both would be currently available. However, there were also some opinions from health care providers that patients should pay privately to increase their adherence to the treatment program. Simultaneously, they opted for establishing a "social welfare fund for cases of hardship" (medical oncologist). In particular, the nurse experts pointed out that cancer survivors usually struggle financially because they have lost their jobs or cannot work anymore because of their cancer.
Integrative approach
All patients wished to have an integrative approach to their therapies. They asked their medical doctors or nurses about what complementary medicine (CM) interventions they could add to their therapy.
In general, the health care providers considered CM approaches as especially supportive for their patients, contributing actively to their recoveries. They noticed a growing awareness in medical doctors and hospital environments of the possibility of adopting an integrative approach and referring patients to the respective institutions. However, patients complained about a lack of interdisciplinary collaboration between the different health care providers.
The health care providers did not have the impression that their patients followed a coordinated integrative treatment program at the time of the interviews. Instead, they experienced isolated applications of single CM interventions in their patients, such as yoga, diets or phytomedicine, which had been recommended to the patients by their private environments or were found on the internet.
The health care providers themselves only recommended CM interventions for which they personally had a clear idea of the benefits. Some of them adopted a stance of not believing in certain interventions but thinking "even if it is not effective, it does not harm" (nurse expert). Some health care providers were critical about the effectiveness of CM interventions and opted for strict "academic, scientific, evidence-based complementary medicine" (radiation-oncologist).
First experiences with the implementation of the integrative CRF treatment program in our clinic point to the program being feasible if patients come into the clinic with CRF as their main complaint. However, more often, CRF is one of many complaints that cancer patients report when coming to our clinic. Our medical doctors then prioritize the interventions with the patients. Exercising and mind-body medicine techniques are discussed with every CRF patient. Then, usually one other intervention from the program for CRF is selected, often acupuncture or acupressure. In addition, procedures or remedies which cover both CRF and the patients’ other symptoms are selected, such as mistletoe extract or other herbal drugs.