Co-designing a nutritional prehabilitation solution for head and neck cancer patients receiving radiotherapy: A novel participatory approach

Head and neck cancer is a disease that strikes the mouth, throat, and sinuses, areas essential for the simple, daily acts of eating and drinking. When a person receives a diagnosis, they often face a double burden: the cancer itself can cause malnutrition, and the standard treatment of radiotherapy frequently makes eating even harder by damaging taste buds, causing pain, and making swallowing difficult. This loss of strength and weight before treatment even begins can make the therapy harder to endure and slow down recovery. To counter this, doctors have begun exploring a concept called prehabilitation. This is not a new treatment for the cancer itself, but rather a preparation phase where patients build up their physical strength and nutritional reserves before the heavy lifting of radiotherapy starts. The goal is to enter treatment as strong as possible, improving the body's ability to withstand the side effects and heal afterward.

For years, researchers have known that these preparatory steps are vital, yet they have struggled to figure out exactly how to deliver them in a way that patients can actually use. The challenge lies in the complex reality of a cancer diagnosis. Patients are often overwhelmed by medical jargon, emotional distress, and a flood of information, making it difficult to focus on diet and exercise. Furthermore, the path to treatment is often fragmented, with different specialists handling different parts of care, leaving gaps where nutrition advice might get lost. Recognizing that the best solutions come from those who have lived through the experience, a team of researchers in the United Kingdom decided to stop guessing and start listening. They gathered patients, caregivers, and medical professionals to design a new way forward, using a method called a Living Lab. This approach treats the people who will use a solution as equal partners in creating it, ensuring the final product fits the messy, real-world context of a cancer journey.

The study brought together twenty-one people to map out the obstacles and opportunities surrounding nutrition before radiotherapy. Seven patients and three caregivers shared their personal histories, while eleven health professionals, including dietitians and oncologists, offered their clinical perspectives. Through a series of workshops, the group dissected the journey from diagnosis to treatment. They found that the biggest hurdles were not just a lack of food, but a lack of clear, timely information and the emotional weight of the diagnosis. Patients described receiving too much information all at once, or receiving it too late, after they had already lost significant weight. They spoke of feeling a loss of control, where the fear of the future made it hard to focus on the present task of eating. The professionals confirmed these fears, noting that patients often felt overwhelmed by the sheer volume of medical details and that the care pathway was often disjointed, with nutrition rarely being the first thing discussed.

From these conversations, five main themes emerged that shaped the design of the new intervention. The first was information: patients needed it earlier, simpler, and in a format they could revisit, rather than a single overwhelming lecture. The second was emotional well-being; the group realized that motivation to eat and exercise is deeply tied to mental state, and that feeling in control of one's health is a powerful motivator. The third theme was physical strength; patients and doctors alike agreed that the goal was not just to maintain weight, but to preserve muscle, which is crucial for recovery. The fourth was social connection; having a partner, family member, or peer to share the burden made the difficult days more manageable. Finally, the care pathway itself needed to be smoother, ensuring that nutrition support was woven into the treatment plan from the very first appointment, rather than added as an afterthought.

With these insights in hand, the group moved to the solution phase, where they co-created three specific tools to help patients navigate the pre-treatment period. The first was a simple card, designed to be handed to a patient at the moment of diagnosis or when they agreed to radiotherapy. This card lists just three key actions: eat well, stay active, and keep in touch with others. By limiting the advice to three clear, positive steps, the card aims to reduce anxiety and give the patient an immediate sense of agency. The second tool is a physical booklet, or passport, that the patient holds onto throughout their treatment journey. This is not a generic pamphlet but a personalized record where patients and dietitians can track progress, set goals, and record practical tips like recipes or ways to manage side effects. It serves as a central hub for information, ensuring that nothing is forgotten and that the patient remains the driver of their own care plan.

The third element is the method of delivery itself. The researchers emphasized that simply handing out a card or a book is not enough; the education must be deeply personal. The dietitian's role is to explain why nutrition matters specifically to that individual, connecting the dots between eating well and the ability to tolerate treatment. This approach uses behavior change techniques to help patients understand their own motivations and build confidence. The group agreed that these tools must be practical and accessible, avoiding complex medical language. They also decided to keep the format simple, using paper-based materials rather than digital apps, because they recognized that some patients might not have easy access to technology or the digital skills to use it.

The result of this collaboration is a set of prototypes that are now ready to be tested in a real-world hospital setting. The researchers are careful to note that these tools have not yet been proven to improve health outcomes; that is the job of the next phase of their study. However, the process of creating them has already yielded a significant finding: when patients and professionals work together as equals, they can identify the true barriers to care and design solutions that address them directly. The study highlights that the path to better health is not just about medical science, but about understanding the human experience of illness. By focusing on the balance of information, the power of personal motivation, and the need for a supportive network, the team has created a framework that respects the complexity of the patient's life.

This work represents a shift in how medical interventions are developed. Instead of experts designing a solution in a lab and then trying to fit it to the patient, the solution is built from the ground up with the patient's voice at the center. The three key actions card, the nutrition passport, and the personalized education approach are not just pieces of paper; they are the physical manifestation of a conversation between those who suffer and those who treat. If the upcoming feasibility study shows that these tools are acceptable and accessible to patients in the National Health Service, they could become a standard part of care for head and neck cancer. This would mean that future patients might enter radiotherapy not just with a diagnosis, but with a plan, a sense of control, and the strength to face the treatment ahead. The study does not claim to have solved the problem of malnutrition in cancer, but it has provided a clear, human-centered path forward for tackling it.