A call for collaborative action: Experts and patient advocates unite to advance digestive health across Europe

Leading experts in digestive health, together with dedicated patient advocates, convened at UEG Week 2023 on Sunday, 15 October to launch the Digestive Health Roundtable. This initiative marks the first in a series of multidisciplinary meetings, all driven by a shared purpose – to address challenges, identify opportunities and reach consensus on joint actions aimed at improving digestive health across Europe.

This meeting comes at a pivotal time for digestive health. Recent findings from United European Gastroenterology’s (UEG) latest White Book shed light on the substantial and escalating societal and economic burden of digestive diseases and cancers. In 2019 alone, there were over 72 million incident cases of digestive diseases and one million cases of digestive cancers in Europe. Despite these alarming figures, they remain poorly understood areas and attract relatively little policy, research and funding attention. Multi-stakeholder action, inclusive of the patient voice, is therefore urgently needed to develop evidence-based strategies that can accelerate progress in the field.

Commenting on the significance of this meeting and its objectives, Patrizia Burra (UEG Public Affairs Group Chair) stated, “We recognise the vital role that patient communities play in sharing their unique, first-hand knowledge and consider them as equal partners in our mission to enhance digestive health across Europe. In alignment with our society’s vision, which places patient outcomes at the forefront of all that we do, our aim today is to listen and learn from the diverse patient-focused perspectives represented here.”

She added, “We are committed to joining forces in our advocacy efforts to ensure that the discussions and recommendations extend far beyond this room, translating into insight-driven policies that make a meaningful difference in the lives of patients.”

Representing the viewpoints of prominent UEG experts and patient advocates across multiple specialities, the meeting’s attendees discussed recommendations across three core topics crucial to shaping a healthier future, prevention, early diagnosis and quality of life.

Prioritising prevention

Milan Mishkovikj (European Liver Patient Association) emphasised the significance of prevention in improving outcomes, noting, “There is strong evidence to suggest that many digestive diseases and cancers can be prevented, with liver disease being among the most preventable. To successfully shift our focus from treatment to prevention, a concerted effort at the EU level is needed to manage risk factors effectively. The promotion of healthy lifestyles among the general public, including limited alcohol consumption, a balanced diet and regular exercise, sit at the centre of this.”

Natasha Münch (Digestive Cancers Europe) also underscored the importance of prevention, “Recent studies have highlighted that over half of all digestive cancers are caused by modifiable risk factors, such as obesity, smoking and alcohol consumption. To ensure we are reaching individuals at the earliest possible stage with compelling messaging about healthy behaviours, it is crucial that we combine our expertise to create EU-wide awareness initiatives informed by both clinical and patient insights.”

Advancing early diagnosis

To discuss the critical role of early diagnosis, Lena Fels (Danish Celiac Association), outlined the challenges patients with coeliac disease face in this regard. She commented, “In a new Danish survey, we discovered there is an average delay of 2 years from the onset of symptoms to first healthcare contact and 4 years from initial healthcare contact to diagnosis.”

She continued, “These significant delays stem from misunderstandings and a lack of knowledge among general physicians. To address this issue, we must continue to develop and promote the use of guidelines among healthcare professionals. This will not only help bridge knowledge gaps but also strengthen collaboration between patients and doctors, ensuring treatment always follows diagnosis, not the reverse.”

Adding to this, Tunde Koltai (Association of European Coeliac Societies) said, “Over the past few decades coeliac disease has undergone a major paradigm shift and is no longer a rare paediatric phenomenon. In fact, the majority of newly diagnosed individuals are now aged 30 and above. With the incidence of this disease steadily rising, early diagnosis is one our main concerns. This is particularly vital given the substantial delays seen in diagnosing coeliac disease, which may be even more protracted across the rest of Europe than what the recent Danish survey suggests.”

She further emphasised “Enhancing awareness of the symptoms of coeliac disease and the impact of late diagnosis among both the general public and healthcare professionals should be a top priority to avoid disease progression. There is great opportunity for cross-sector collaboration here, and we have already begun working with food producers and the agriculture sector to advance our education efforts.”

Benthe Bertelsen (Danish Colitis-Crohn Association) echoed these sentiments from the perspective of patients with inflammatory bowel disease (IBD) and shed light on the challenges they face stating, “Currently over 1 million Danes live with an intestinal disease, encompassing a range of diseases including Crohn’s disease (IBD), ulcerative colitis (IBD), bile acid diarrhoea (BAD), microscopic colitis (IBD) and irritable bowel syndrome (IBS). As individuals can have IBD, BAD and IBS in different combinations, early diagnosis can be challenging. Due to these complexities, it can take on average 2 to 4 years from the onset of symptoms for a patient with IBD to receive a diagnosis.”

She continued, “This delay can lead to severe complications, which especially impact our young patients, affecting their social lives and schooling. It can result in low self-esteem, isolation and a loss of confidence in their abilities and options. It becomes a vicious cycle, with the extended period without a diagnosis intensifying the burden of the disease.”

Finally, Natasha Münch and Milan Mishkovikj also highlighted early diagnosis as a pressing concern for digestive cancers, pointing to the lack of screening available for those at risk of early-onset colorectal cancer and liver cancer. Regarding liver cancer, Milan Mishkovikj stressed the need to streamline liver cancer screening so it can be recommended widely across the EU. He underscored the pivotal role of patient advocates and medical societies in simplifying complex issues, such as this, to pave the way for implementation.

Enhancing quality of life

This discussion also turned its attention to the measures required to enhance the quality of life for patients impacted by digestive diseases and cancers.

Salvatore Leone (European Federation of Crohn’s and Ulcerative Colitis Associations) commented, “Quality of life is a particularly pertinent issue for patients with IBD due to the physical and emotional challenges associated with the condition. To gain a deeper understanding of the patient experience, we must enhance the collection of patient-reported outcomes. This data can offer direct insights into the patient perspective, helping us uncover the true impact of this disease and its treatments on lives of patients.”

Patrizia Burra agreed with this, underlining the need for collaborative efforts to identify public data resources that can provide greater clarity on patient needs in numerous disease areas, as well as highlighting further areas for research.

Lone McColaugh (Danish Liver Association) drew attention to another vital consideration for enhancing the quality of life among patients – the stigma associated with certain digestive diseases and cancers. She said, “The stigma surrounding liver disease has been shown to have a significantly negative impact on an individual’s quality of life. In some cases, it even leads to delayed diagnosis as patients hesitate to seek help due to the negative connotations linked to this disease. It therefore remains essential that we continue to advance our educational initiatives across Europe, aimed at combatting this stigma.”

Tunde Koltai also underlined the significance of transitional care for coeliac disease patients, highlighting how the transition from paediatric to adult care lacks sufficient regulation in most European countries. This is despite the importance of regular lifelong monitoring, including management of a gluten-free diet, in preventing further complications and associated diseases. Moreover, she stressed the need to acknowledge the burden imposed by a lifelong gluten-free diet, not only on the diagnosed individuals but also on their immediate families, who also face a 1 in 10 risk of developing the disease themselves.

In the context of IBD, Benthe Bertelsen discussed strategies to enhance the quality of life for patients, underscoring the importance of not only discussing the diagnosis of Crohn’s or colitis but also addressing the accompanying illnesses that can be equally burdensome or sometimes even more challenging than the primary diagnosis. She emphasised the need to give equal attention and seriousness to these accompanying conditions, as neglecting them can leave patients feeling as though their doctor has reduced them to a bowel disease patient, when, she added, “For better – and worse – we are so much more than that.”

In closing, Patrizia Burra summarised the key themes explored during the meeting and the collaborative opportunities that lie ahead, stating, “Today’s meeting has laid a solid foundation for a series of recommendations that not only reflect expert insights but also resonate with the real-life experiences and needs of patients.”

She continued, “What is clear from our conversations is that there is a pressing need for renewed action to drive forward impactful policies that promote the prevention and early diagnosis of digestive diseases and cancers, while also elevating the quality of care. The discussions sparked and recommendations put forward will be instrumental in guiding our joint efforts to advocate for change and, ultimately, reduce the burden of digestive diseases throughout Europe.”