Creating opportunities to give IBD patients a voice to help #breakthesilence on World IBD Day

Galapagos is dedicated to supporting people living with Inflammatory bowel disease (IBD) by listening to their challenges and needs. Today, we are participating in World IBD day activities, supporting the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA) and the IBD patient community to raise awareness of IBD, the challenges associated with the condition and help to #breakthesilence.

IBD comprises of a group of chronic conditions including Crohn’s Disease, and Ulcerative Colitis, caused by inflammation in the lining of the digestive tract.[i] It affects over 3 million people across Europe.[ii] 

Our purpose is to pioneer for patients and one of the areas that we strongly feel needs innovation and a fresh approach is IBD. It is important that we understand what really matters to the IBD community. As Salvatore Leone, Chairman for the European Federation of Crohn’s and Colitis Associations (EFCCA), the European patient organisation supporting people with IBD tells us, “It is important to give people living with the disease a voice and tackle the discrimination experienced in its various forms, including the associated stigma and taboos relating to relationships and social exclusion, that can have an impact on the person’s psychological and physical wellbeing. We need to help address these challenges, improve understanding of the impact of the disease on a person’s quality of life and encourage conversation to support the IBD community. Therefore, this year’s theme for World IBD Day is wellbeing and we hope that this campaign will shed a light on the invisible impact of the disease and help to break the silence.” To hear more about World IBD Day from EFCCA watch the video below and join the conversation online using #breakthesilence.

Despite significant scientific progress in the understanding of chronic inflammatory diseases, we have heard from patients that they continue to face challenges in controlling their IBD. These in-depth insights, gathered through a novel ethnographic research approach, have been a way for us to encourage patients to  #breakthesilence and provided us with better understanding, ensuring we are listening to the patient needs and allowing us to provide tailored support services and resources.

Working closely with a team of ethnographic specialists, led by Mauro Morando, Captain at Brains&Cheek, we share some of our insights on the key areas that are the biggest challenges for people living with IBD today.

How ethnographic research provides meaningful IBD patient insights

People living with IBD experience significant clinical, social, psychological, and economic burden, which can have a devastating impact on their lives. Ethnographic research provides meaningful patient insights as researchers have been able to observe, listen to, and interact with people living with IBD in their personal rather than clinical environment.

Mauro Morando explains, “This patient-centric research allows people living with IBD to be observed during their normal daily routine, providing opportunities for more in-depth conversation around the challenges of IBD and what needs to be addressed holistically to improve overall well-being and quality of life, in a way that might not otherwise be possible. It also gave a broader 360-degree perspective on the lives of these people by interviewing some of their friends, caregivers and healthcare professionals.”

What we heard about the psychological impact of IBD

One of the most disabling consequences of IBD is social isolation. As patient journeys are unique, people living with IBD can feel isolated and unsupported, which can have an impact on their well-being. People living with IBD can find it hard to connect with each other as everyone experiences a different journey, with varying symptoms. Information or support which resonates with one patient, may not with another.

The stigma and discrimination that patients feel from others, whether it be friends, family, public or colleagues who lack understanding of the disease, also play a part, making people living with IBD feel uncomfortable talking to anyone about this taboo subject, and seem to believe they can’t turn to anyone for support.

People living with IBD feel others can be unforgiving and unwilling to make concessions because they seem ‘normal’ on the outside and feel they cannot openly talk about their disease in their personal but as well professional sphere. Insights from people living with IBD shine a light on the constant anxiety and isolation, with one stating that, “Sometimes your friends do not see you looking unwell physically, so they just don’t understand”. There is therefore a significant need to educate the public about IBD and empower people living with this debilitating ¨invisible´ disease to share their experiences and #breakthesilence.

Embarrassment and a constant struggle of uncertainty also can have a huge impact on people living with IBD. The anxiety of being away from home and in public situations with the potential for humiliation has a profound impact on their lives. Mauro says that, “Home is the only comfort zone for these people, who choose to distance themselves from any social situation to be safe”.

Recognising and bringing these psychological challenges to light can help break the stigma and make these people feel empowered to speak up.

What we heard about attitudinal acceptance of IBD and how that impacts on management of disease

The diagnosis of IBD as ‘a chronic condition for life’ is extremely hard to accept. Many people living with IBD chose to initially deny their diagnosis, especially younger people. They want to believe they can live as before and somehow symptoms will disappear or that they can control and manage anything that may flare up. There is fear associated with a diagnosis of IBD and it can be easier for patients to blame it on other factors, for example something they ate, rather than their condition.

The research found that people may perceive to live a ‘normal’ life, but often unconscious concessions are made in their day to day life. They often adapt their lives to avoid certain situations and do not want to be embarrassed. Further insights from people living with IBD highlight their initial denial and lack of acceptance that their condition is for life; with some expressing that, “I cannot accept I am ill, that I have a severe disease” or that “It must be my diet or stress levels” or that “It will surely go away at some point”.

A lack of acceptance and denial can cause treatment adherence issues leading to a disease not correctly managed. Mauro found that, “There is a clear transformational moment in a person’s journey when they can accept their condition is for life. When IBD is accepted and correctly managed at an early stage, the patient can take back control, and have a better quality of life.”

Denial is commonly used as a form of a coping mechanism as people living with IBD might not want to accept they have the disease for life. This denial acts as a resistance to breaking the silence, as some feel they do not want or need to change. This highlights the need for better education and informed discussions with patients at an early stage of diagnosis, to take away this reluctance and avoidance. Mauro explains, “When people experience a moment of acceptance, the correct treatment and management can be incorporated into their routine; control is taken back, and people can live fuller lives”.

What we heard about creating a more collaborative relationship between a person living with IBD and healthcare professional (HCP), to effectively manage IBD

The research highlighted the need for more open communication and collaboration between people living with IBD and their HCPs in managing the disease and its symptoms. People living with IBD may feel they do not want to talk to their HCP or feel unable to do so, about other factors that can impact on their IBD symptoms including diet, lack of sleep and lifestyle. One person stated that for them, Fatigue is the most complicated symptom to explain as it is quite personal,” while another expressed that “I have learned to live with the symptoms”. Although some have learnt to ‘live’ with their symptoms, it may be beneficial for them to have more open discussions with their HCP but are unclear whether there is an opportunity to talk about this in their consultations.  

“In general, patients feel their physician is mainly interested in their clinical symptoms and inflammatory markers and have less time or interest to discuss their quality of life, lifestyle, and emotional wellbeing,” says Mauro. However, HCPs potentially do understand patient frustrations with IBD and the different factors that impact their condition – however for them medication to effectively manage IBD is incredibly important to ultimately improve outcomes and quality of life.

Conscious collaboration and open communication between HCPs and patients could provide a more holistic and tailored approach to the management of the disease, showing that HCPs are indeed listening to the individual patient needs, around wider well-being challenges, an example of success which can help to #breakthesilence.

Supporting EFCCA on World IBD Day

World IBD Day is an important event that is dedicated to giving patients a voice. Galapagos were delighted to interview EFCCA’s Chairman, Salvatore Leone, about the importance of raising awareness of the challenges faced by people with IBD, why well-being is this year’s theme and how EFCCA hopes to help people with IBD #breakthesilence. Watch the interview here with Galapagos’ Patient Advocacy Lead, Marina Sardone.

For Galapagos, breaking the silence isn’t only about raising awareness of IBD and informing people about patients’ experiences. It is about speaking to people living with IBD, to understand the hidden facts about what it is really like to have this condition. The testimonials can be shared with HCPs and stakeholders to find together solutions. This will help patients understand how they can correctly manage their disease and what they can expect from treatment.

Galapagos is proud to support and stand by patients on World IBD Day to #breakthesilence, giving them a voice and promoting the importance of well-being.

For more information on World IBD and how to get involved please visit https://www.efcca.org/en/world-ibd-day-2021 and join the online conversation online using #breakthesilence

Thank you to Mauro Morando and to Salvatore Leone for their participation in our interviews, to hear from the patient voice and to understand activities to raise awareness of IBD and help people #breakthesilence.

[i] McDowell C, Farooq U, Haseeb M. Inflammatory Bowel Disease. 2020 Jun 28. In: StatPearls [Internet].

[ii] Ashwin N Ananthakrishnan, Gilaad G Kaplan, Siew C Ng. Changing Global Epidemiology of Inflammatory Bowel Diseases: Sustaining Health Care Delivery Into the 21st Century. Clinical Gastroenterology and Hepatology. 2020; 18(6): 1252-1260