Department of Clinical Medicine, Center for Nutrition and Bowel Disease, Aalborg University, Denmark
Department of Clinical Medicine, Center for Nutrition and Bowel Disease, Aalborg University, Denmark
Cancer patients frequently experience malnutrition because the disease and therapy cause severe weight loss in 15% to 80% of patients. Patients who lose weight are less likely to survive, be able to finish the recommended treatments, and have lower quality of life. Optimizing nutrition intake during cancer is challenging and necessitates prompt individualised nutritional therapy in order to maintain weight. The objective of this multi-method development study was to develop a decision support tool that would support nutrition intake and contain pertinent information to support patients as well as professionals on nutritional aspects throughout the course of treatment, including rehabilitation, in order to prevent weight loss in cancer patients.
Methods: With the help of experts and patients, an APP for decision support was created.
For the purpose of evaluating the effectiveness of weight development and semi-structured qualitative interviews with patients and professionals separately, descriptive data were gathered. Qualitative content analysis was used to examine the interviews.
Patients maintained their weight. The tool assisted 42 patients' nutritional intake at home. When intake started to decline, patients and experts worked together quickly and effectively to decide and implement the best nutritional therapy plan. Professionals and patients alike expressed great satisfaction with the system.
Between 15% and 80% of all cancer patients undergo severe weight loss during the disease and treatment, making malnutrition a prevalent and dangerous issue for these patients. Losing weight has physical effects such as muscle loss and diminished functionality, as well as psychological ones such as depression, social isolation, and a lower quality of life [1-3]. Patients who are losing weight are less likely to finish the recommended course of treatment. Poor nutrition has been demonstrated to frequently cause patients receiving radiation therapy or chemotherapy to delay or stop their treatments, which lessens the therapeutic benefit.
Poor outcomes are specifically impacted by poor nutritional status.
We know from the literature that even a minor weight loss has a substantial impact on the patient's response to treatment, and that a bigger weight loss, particularly a loss of muscle mass, increases the risk of death [4–7]. Long- and short-term clinical results have been found to be improved by nutrition intervention and individualised follow-up [8,9]. However, it appears that success depends on early intervention, individual patient involvement and compliance, treatment of nutrition effect variables, and interdisciplinary cooperation [1,3,10,11]. Therefore, it is essential that an individually tailored nutrition course is started as soon as possible.
We know from the literature that even a minor weight loss has a substantial impact on the patient's response to treatment, and that a bigger weight loss, particularly a loss of muscle mass, increases the risk of death [4–7]. Long- and short-term clinical results have been found to be improved by nutrition intervention and individualised follow-up [8,9]. However, it appears that success depends on early intervention, individual patient involvement and compliance, treatment of nutrition effect variables, and interdisciplinary cooperation [1,3,10,11]. Therefore, it is essential that an individually tailored nutrition course is started as soon as possible.
Maintaining strength and exercise levels, advising patients to eat a sufficient and appropriate diet, and switching medical nutrition therapy as necessary can all help lower the risk of the length of the disease and the recovery process, as well as the quantity and severity of consequences. Studies have revealed that inadequate practises exist when it comes to providing nutritional therapy and guidance to cancer patients [6].
To be able to eat enough while battling a disease that impairs the desire and ability to eat, people with cancer and those who are malnourished due to their illness may need to adjust their attitudes toward food and their food culture. For instance, patients with cancer and malnutrition brought on by their illness may typically strive to lead a healthy lifestyle to avoid type 2 diabetes or cardiovascular issues, just as healthy individuals should.
In order to meet their nutritional needs while they are unable to eat, patients may consequently need to disregard their perceptions of food and health as well as their own experiences with correct healthy eating habits.By stating the decision, outlining the options, and assisting people in evaluating options from a personal point of view, Decision Support Aids (DSA) are tools created to present treatment options based on the best evidence for patients. This improves the quality of the patient's decision without compromising the patient's preferences. A DSA can also assist medical personnel in educating, organising, and incorporating patients in decision-making.
A decision-support tool for cancer patients who have lost weight that they use both independently and in conjunction with medical professionals throughout the course of the cancer may be able to qualify patients and medical professionals into the best possible dialogue on nutrition and nutrition therapy. A nutrition decision-support tool created for cancer patients who have lost weight may assist the patient in keeping an eye on and tracking their nutritional intake, weight, and other symptoms. The objective of this multi-method development study was to develop a decision support tool that would support nutrition intake and contain pertinent information to support patients as well as professionals on nutritional aspects throughout the course of treatment in order to prevent weight loss in cancer patients.
Additionally, to facilitate informed discussions between patients and experts based on observations, monitoring, and preferences of the patient, as well as to launch appropriate efforts and suggest dietary therapies in cases of impairment.
The Public and Patient Involvement (PPI) study's goal was to create and put into practise a tool that would assist cancer patients in losing weight while making knowledgeable decisions about appropriate nutrition therapy in consultation with medical professionals throughout the course of treatment, from initial checkups to successful rehabilitation.
We created an APP that patients may use as a single system on a tablet or smartphone in collaboration with nine patients, eight nurses, three doctors, a team of IT professionals, and the study team (authors). The three steps of the iterative approach used to design the APP were analysis of needs and experience, which served as the framework. Along the way, patients and staff were given the opportunity to test and provide feedback on the development.
A food and dietary registration module that patients can use at home to monitor and guide their diets while also providing information about the right, individually calculated dietary intake and foods the patient can eat to improve their diet. On the basis of the Harris-Benedict equation's scale, requirements were established. The algorithm estimated a daily protein requirement of 1.3 g/kg. The patient's progress toward the day's objective is shown by an arrow. There are ideas offered for reaching the objective. A red arrow indicates that the objective is far away; it subsequently turns yellow, then green, and includes a numbered % when the goal is near or attained.
a weight-registering module that is also used to figure out how much protein and how much energy each person needs. Green to red corresponds to goals.
a nutrition-related symptom module where patients rate mouth sores, mouth ulcers, early satiety, pain, exhaustion, and sadness. Red to green (1–10) corresponds to the worst case scenario or no issues.
The APP's physical activity module promotes exercise and training, and patients track the amount of time they spend each day as well as the four various stages of activity they engage in. Patients communicate information to the providers they selected to include on the aforementioned. Patients are advised to do this twice weekly and/or the day before going to the hospital.
With a single click, the patient connects all of his or her healthcare providers—nurses, oncologists/physicians, and dieticians—so that they can follow the patient's entries and continuously get an overview of the patient's nutritional status, dietary intake, discomfort level, and activity level. This allows them to prepare for the patient's appointment. We created a website for experts to collect the patient data given below. Using the information available, professionals should get ready for the patient encounter so they can advise the patient individually and intelligently about the course of therapy and support interaction regarding decisions.
The patient can find explanations, recommendations for alleviation, housing guidance, and knowledge about the significance of maintaining physical fitness and not losing weight while undergoing treatment in the information library module.
In a similar way, the patient discovers information on weight loss therapy alternatives in everyday language.The name "NutriDia" refers to the conversations between patients and specialists on nutrition.
For the purpose of evaluating the outcomes, information was gathered through semi-structured qualitative interviews with patients and professionals. Qualitative content analysis was used to examine the interviews [13].Ethics-related matters Prior to participation, the patients signed an informed consent form. The study was approved by the Region North Jutland Ethical Committee of Denmark.
Patients with head and neck cancer and those with gastrointestinal cancer were our main focus areas. This was done under the presumption that all nutritional issues would be represented by these patients. Two additional cancer patients were added because they had heard about the APP from their medical staff, who determined that they would gain from being included. 51 out of the total 101 patients that were screened consented to participate. Of them, 42 patients were included in the intervention phase and 9 patients were included only in the development process. Based on Aalborg University Hospital, the decision support tool was utilised by patients and medical staff throughout the duration of the patient's treatment. The Oncology Therapy Departments were participating, including surgery, chemotherapy, and radiation therapy. Additionally, patients used the system in collaboration with other medical professionals throughout their cancer treatment, including with general practitioners and clinicians in rehabilitation clinics. Due to its portability to another Department of Oncology that took good care of patients and equipment and considered it helpful and simple to follow, one patient used it in another hospital. After the final tool was implemented, Table 1 displays demographic data for patients who used it during their therapy. The 50 patients who were initially thought to be NutriDia candidates but did not participate were generally characterised by poor general health, a lack of interest in learning more, a lack of compliance, and a lack of IT skills.
Of them, 14 were included but made the decision to leave after a few days with support.
The fourteen patients who lost weight lost relatively little, and sixteen patients maintained weight during the five-month intervention period, demonstrating that the included patients were able to retain weight to a large extent. Additionally, during the time twelve patients marginally increased their weight. More than this, some patients experienced temporary weight loss or gain but were able to regain it after their treatment. Table 2 displays the evolution of weight.
All patients' dietary intake was observed, and it was generally adequate for each patient and the entire group.Thirteen patients who had an average oral intake of between 40 and 1020 kcal/day (minus 356 kcal/day on average) received either enteral or parenteral nutrition supplements. 18 patients consumed 275 more calories per day (30 kcal to 557 kcal).
Based on the following aspects, NutriDia offers patients and healthcare professionals a solid foundation for making common nutrition-related decisions:
The patients were very keen to track their intake of food, weight, symptoms or discomfort, and level of activity. The patients also said that they had a better understanding of nutrition, nutritional therapy alternatives, the causes of discomforts, and how to treat them.
Patients say the tool helps them enhance their ability to plan, control, and overview their daily intake of protein and energy. Patients constantly looked at the app's front page's scale, which shows how much the user was lacking in terms of his needs.
The decision-support tool has assisted patients, some of whom had already lost weight prior to the start of the cancer treatment course, in halting additional weight loss. This may be explained by the motivating factor mentioned by the involved patients, particularly in regard to their knowledge of and interest in their nutritional and dietary challenges, which they felt helped them to realise questions they had for the professionals and to find good solutions with the staff.
The outcomes demonstrate widespread satisfaction with the decision assistance tool's straightforward and basic design, which emphasises the colours and traffic signal system.
The colour coding system, in which the patient receives "yellow" for enough energy intake and "green days" for reaching the target, was said to be essential for keeping the patient's attention on eating enough and sustaining their sense of satisfaction and desire to monitor nearly everyday. Thus, the colour codes encourage the desire to eat, which is expressed by all patients. Patients claim that NutriDia has improved their understanding of food's nutritional value, particularly in terms of protein and calorie content. The patients found that the APP gave them the chance to follow their protein target and taught them which meals contain a lot of protein, thus patients' protein intake received special attention.
Many patients cited increased understanding since they previously believed that protein density could only be found in meat and dairy products, neither of which were particularly palatable. Patients also mention that NutriDia is a useful tool for altering protein and calorie intake and that the app has helped them get a general idea of their weight. Finally, a number of patients are content with NutriDia's recommendations for foods to include in the diet and believe that this may encourage patients to explore foods they have not previously tried. As a patient put it:"Actually, I didn't understand how many calories and grammes of protein there were had never before required it. I only ate when I was actually hungry. I now know what I require. You can also really clearly see how much you have and how much you need. This morning, the nurse complimented me because she could tell I was doing well. Additionally, you enjoy compliments. I receive these suggestions for what I can eat in the evening via push notifications. The likes of ice. I appreciate this trait ".
Patients felt that they were making a difference in their care and that the professionals were well-prepared for their meetings when it came to nutritional issues and the side effects of cancer therapy. This supports one of NutriDia's objectives, which is to promote patient participation in the course of treatment. Patients who actively participated in the normally helpless condition that comes with a cancer diagnosis, such as loss of power and desire to eat, reported feeling extremely satisfied.
The patient information library helped the tool achieve its educational objective by raising patients' awareness of both their own side effects and possible remedies.
Numerous patients stress the importance of NutriDia's features in connection to their interactions with medical experts, such as doctors, nurses, and dieticians.
For the conversations and discussions the patients had with the professionals, the registered entries in the app served as a starting point. Numerous patients spoke of feeling secure knowing that the experts could monitor the entries the patients made at home. Additionally, a number of patients claimed that the professionals used the information that patients had entered into NutriDia by beginning with the specific issues entered, such as fluctuating weight, nausea, or side effects of treatment, for example. One patient referred to this as: "They encourage me now that it is time for me to do something about these nutritional supplements and such things." "Since you've lost a little, you should try it now."
Only one patient complained that the oncologist did not use her entries and had little to no interest in her diet or attempts to lose weight. However, Se had assistance from the nurses. Principal findings from professional interviews According to experts, NutriDia encourages more patients to eat the recommended amounts of calories and proteins while also controlling their weight. They also discovered that the app helps patients feel in control, which is beneficial for many patients in situations where they may feel out of control."I find that because they themselves enter the weight curve, we catch them early.
Therefore, I believe it becomes quite clear to them (patients) how quickly it can go and how they could not experience the significant weight loss" (Nurse, Radiation Therapy). "I also believe that after receiving the APP, kids are considerably more conscious of receiving the complete dose" (Nurse, Radiation Therapy). "Patients have reported that they receive a pop-up notification that "you're behind goals" It greatly aids many of them." (Dietitian, Day Care for Cancer Patients) Data from NutriDia is used by doctors, nurses, and dieticians as a starting point for conversations with patients. More professionals use information from NutriDia to qualify focus in each session, both before and during the consultation, in addition to facilitating communication.
We spoke outside of NutriDia, where I could see that the patient had consumed two of the lost kg while still meeting her demand for protein and calories (Dietician). It's a good tool to use before consultation to determine the true situation and the patient's response to cancer treatment (Doctor). When a shared objective needs to be established, NutriDia makes it simple to actively involve the patient. "It feels more like we are in this together when we can review the entries together and decide that now is the right time to do this or that. For instance, the patient I spoke with yesterday was less resistant to the installation of the tube than I had anticipated" (Oncologist).
All of the interviewees concur that NutriDia provided them with a brief rundown of their patients in the morning. When the radiation therapy nurses convened in the morning, they used NutriDia to receive a general overview of the patients who had arrived for treatment that day: "I walk in and look in the morning and see; How are the different patients I have today, how is their weight coming along?" (Nurse, Radiation Therapy) It's easy to see who is in poor condition because the weight drops and the nausea increases, and I can prepare for those patients when there might be nothing wrong with some of the others. So it provides me with that quick overview (Nurse, Radiation Therapist).
Primary Sector: Dieticians, who found NutriDia to be of considerable relevance, mostly used it in the primary sector, which includes rehabilitation. In rehabilitation, there is typically more time available for each patient individually, and NutriDia quickly became a key part of the interaction between the patient and the healthcare provider. Professionals also noted that NutriDia's innovative design made it possible to work more closely with patients in between appointments. When the patient was watching their weight gain and improving their intake, NutriDia was frequently used in rehabilitation to help with the withdrawal from enteral nutrition and nutritional supplements.
NutriDia was generally well received and met expectations. The absence of integration with electronic patient journals, which were excluded from the project for data security reasons, was the sole negative aspect.
We did not include a comparison group in this PPI multimethod development study. As a result, we are unable to confirm if maintaining protein/energy consumption and weight loss were also achievable using other strategies. The development, which increased the significance of the real intervention, was spurred on by patient and professional opinions and experiences [14]. Additionally, the instrument allowed for a very active and tailored approach to nutritional therapy, which has already been proven effective by other techniques [5,15].
This research backs up the findings of the Cochrane review, which showed that exposure to decision aids makes people feel more educated, clearer about their values, and more involved in making decisions [16].
With NutriDia's assistance, patients were able to maintain their weight, which provided better conditions for undergoing oncology treatment without experiencing issues connected to nutritional risk [4,5,12,15,17]. NutriDia did a good job of encouraging shared decision-making between experts and patients while engaging individuals in their own nutritional path and therapy. This and NutriDia's capacity to connect with patients in their daily life may be crucial factors in improving improved adherence to nutritional therapy.
42 Head & Neck and GI cancer patients who used the NutriDia decision support tool—which was developed in collaboration with patients and medical professionals—were able to maintain their weight. Its features, such as the ability to track dietary intake and how that affects symptoms, provide motivation and information, support dietary intake, and give patients and their medical professionals a solid foundation on which to base discussions about nutritional therapy throughout the course of treatment.
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