Balloons that measure life

The Burden of Disease Meter makes quality of life visible and discussable in the consultation room. The digital balloons provide insight into physical functioning, fatigue, mental resilience and other factors that influence recovery. A green balloon means things are going well; a red one indicates that extra attention is needed.

This simple colour system has a significant impact: it encourages discussion between patient and doctor on topics that would otherwise often be overlooked. Thanks to the visual feedback and guideline-based recommendations, the tool offers not only insight but also concrete tools for personalised advice, lifestyle improvements and early identification of relapse risks.

“What I’m proud of,” says Dr Breukink, “is that patients are better able to monitor their own recovery process and find it easier to discuss this with their doctor. This can build greater trust and make care more personalised, with more targeted attention to mental and social factors.”

From PROM research to practice

The burden of disease measure for colorectal cancer, known as the “Assessment of Burden of Colorectal Cancer (ABCRC) tool”, comprises both general items covering aspects such as fatigue and physical functioning, and specific modules for patients with colon or rectal cancer, whether or not they have a stoma.

The strength of this tool lies in the combination of a short questionnaire for patients and a simple presentation of the results. Patients and healthcare professionals have contributed to the content of the tool, which has been extensively validated for reliability and content. As a result, it is not just another questionnaire, but a practical tool that truly reflects the patient’s experience.

The visual core of the tool — the balloon graph — was originally developed in COPD care by Dr Annerika Gidding-Slok (CAPHRI). Together with Merel Kimman (KEMTA) and Britt Thomassen (NUTRIM), among others, the model was adapted for the context of colorectal cancer. Each balloon represents an aspect of life, such as energy, pain, mood or daily activities. The height and colour indicate the ‘burden’ per domain. By looking at health in this visual way together with the patient, a complete picture emerges that medical data alone often cannot provide.

The disease burden meter is currently integrated into the DICA dashboard (Dutch Institute for Clinical Auditing), making it available to all Dutch patients and hospitals. “Because patient-reported outcomes are now integrated into the DICA dashboard, they can form a structural part of the consultation in the doctor’s office. This enables us to improve the care and aftercare for colorectal cancer patients,” says Breukink regarding the collaboration with DICA.

A tool for prevention and wellbeing

Although the disease burden meter does not prevent new cases of cancer, the tool can help to prevent problems following treatment. By identifying early signs of deterioration in, for example, physical condition or mood, healthcare professionals and patients can work together to take timely action. The built-in lifestyle module screens for modifiable factors such as diet, physical activity and smoking behaviour, and refers users to reliable sources of information or proven effective interventions. In this way, the tool promotes not only recovery but also long-term vitality — both inside and outside the hospital. Regular measurements (at 0, 3, 6, 12, 18 and 24 months after surgery) make it possible to track recovery patterns and prevent relapse. After all, the results of a previous measurement are visible as grey bubbles in the bubble chart. This combination of monitoring, lifestyle guidance and shared decision-making makes the tool a powerful instrument within a more preventive, personalised approach to care.

The core of this innovation lies in shared decision-making. By allowing patients to enter and review their own data, whilst reflecting on what is most important for them to discuss and address at that moment, a more equal dialogue is fostered in the consultation room. As a result, patients feel more in control of their recovery. They are better able to indicate what is going well and where support is needed, enabling them to receive more appropriate care. Many of them feel better heard and understood. At the same time, it helps the healthcare provider to structure consultations and use time more effectively.

“We see that people feel better prepared for their consultations, and that the communication becomes more in-depth,” says Breukink. “This not only impacts their recovery, but also their confidence, motivation and self-reliance.” The success of the burden of disease meter depends heavily on that user experience. That is why great attention has been paid to user-friendliness: the tool has a familiar hospital interface and works on a smartphone or tablet, with simple navigation and clear displays featuring speech bubbles.

Building appropriate care together

The development of the disease burden meter was a collaborative effort: researchers, patients, healthcare professionals, national organisations (such as the Prospective National Colorectal Cohort (PLCRC), DICA and the Dutch Federation of Cancer Patients) and health insurers worked closely together. Through literature reviews, interviews and testing phases with small patient groups, the tool was refined step by step — from concept to a clinically applicable system. This collaboration reflects a broader shift in Dutch healthcare: from the biomedical to the biopsychosocial model, in which the physical, mental and social dimensions of health are considered equally. This vision fits seamlessly with the national aim of ‘Passende Zorg, in which health, functioning and quality of life carry equal weight to medical outcomes.

The added value of the disease burden meter is particularly evident in the small moments: a patient who realises they have started exercising more and feel a little less tired, or have begun eating a bit more healthily; a doctor who, thanks to the graph, can spot more quickly that recovery is taking longer; a conversation that doesn’t get bogged down in “how are you?”, but delves deeper into what someone needs.

For patients, this feels like recognition. Many say they feel better seen and heard, and that the tool motivates them to actively work on their recovery. Some even start making small lifestyle improvements themselves, simply because the balloons show that it helps. For healthcare providers, the tool offers a streamlined overview that improves the quality of aftercare and may help prevent complications. The hope is that this approach — where data, conversation and experience come together — will become the standard in post-oncological care in the future.

Ready for widespread use

The disease burden meter is currently being widely implemented within colorectal cancer care, but its potential extends further. The principle of patient-driven, visually supported monitoring can also be applied to other conditions, such as breast cancer or urological tumours. Breukink and her team’s ambition is therefore clear: a future in which every patient, regardless of their condition, can actively contribute to their own recovery and quality of life. “Ultimately, we want patients to feel stronger, more energetic and better understood,” she says. “We want care to be not just about survival, but about living.”

A new standard in vital care

With the integration of the disease burden meter into the national DICA dashboard and the close collaboration between research and clinical practice, NUTRIM and MUMC+ are taking a significant step towards patient-centred, sustainable care. A digital bridge between patient experience and clinical decision-making, paving the way for a new standard in vital, patient-centred post-colorectal cancer care. In addition to the outcomes of surgical procedures, we also aim to improve quality of life. The disease burden meter shows what happens when science, technology and empathy come together: a digital bridge between experience and expertise, between patient and professional. And above all — a tool that helps patients recover with greater confidence, insight and vitality.

Text: Danielle Vogt

* The Prospective National CRC Cohort (PLCRC) is a large-scale Dutch research project that collects medical data, tissue and blood samples from patients with colorectal, rectal, small bowel or anal cancer. The aim is to improve treatments, gain better insights into quality of life and provide personalised care.

* DICA is the Dutch Institute for Clinical Auditing. This is an independent Dutch organisation that provides insight into the quality of care through quality registrations and analyses, in collaboration with doctors and patients. 

*HRQoL, Health-Related Quality of Life, is a multifaceted measure that assesses the impact of a person’s health status on their physical, mental, emotional and social functioning. It measures not only the absence of illness, but also reflects the person’s own perception of their health status.