Gastroenterologist Dr Séverine Vermeire explains how lockdowns and communication changes over COVID-19 are taking their toll on ulcerative colitis patients and how we can best support them in the new normal.
In an increasingly virtual healthcare world, the value of doctor to patient communication can’t be undervalued, especially in chronic conditions like ulcerative colitis.
The COVID-19 pandemic might have changed everything about how we communicate, but as humans we still crave social interaction. It’s what makes us who we are and in the healthcare setting, effective and personal communication between healthcare professionals and patients has never been more important. Similarly, the channel of communication used can affect a patient’s experience. For instance, we know that direct communication can be more personal and allows an empathetic connection to be created between patients and their treating physician.
The pandemic has affected the quality of life of patients across the world. For many living with chronic conditions, coronavirus has taken an even greater toll on their physical and mental health. No community knows this more than those living with ulcerative colitis (UC), a condition which includes symptoms that can cause embarrassment and feelings of isolation. For these individuals, having access to information about disease management and treatment options is important to maintaining a good quality of life.
“With towns and cities in lockdown, many public restrooms have remained shut, adding a mental burden on UC sufferers”
Understanding the physical and emotional toll of living with UC
UC is an increasingly prevalent disease that affects more than 2 million people worldwide. A lifelong condition affecting mostly younger people, it is typically identified in the late teens to early twenties. UC features inflammation of the mucosal lining of the colon and rectum, which causes symptoms such as: chronic diarrhoea, bleeding, urgency, weight loss and fatigue. If not treated correctly it can also cause longer term complications, which can include cancer in the long term.
We know that the condition has a lasting impact, which goes much further than physical symptoms and, due to the unpredictability of the disease, sufferers can experience social, economic and emotional upheaval when going about their daily lives. For example, urgency is an ever-present symptom specifically associated with UC that affects daily activities. Patients talk about immediately looking for a toilet if they go out to reassure themselves should they experience any symptoms. With towns and cities in lockdown, many public restrooms have remained shut, adding a mental burden on UC sufferers. For younger patients experiencing symptoms of UC whilst undertaking important life milestones (starting school or university, entering the work environment), the added stress can take a toll on their mental health. As a stigmatised disease, many do not share their stresses with others which can increase feelings of anxiety.
The condition can also affect a patient’s loved ones. For instance, feelings of frustration might occur if a friend or family member wants to be active and go out when a patient might want to stay in due to symptoms such as fatigue. Similarly, the unpredictable nature of the condition and subsequent urgency exhibited by patients experiencing flare ups might cause indirect embarrassment for those accompanying the UC sufferer. Whilst not directly experienced by the patient themselves, this noticeable uncomfortable reaction might cause an increase in stress levels, subsequently taking a toll on their condition by resulting in a flare-up of symptoms. It is a vicious circle.
As doctors, we must recognise that UC is a disease that results in emotional symptoms as well as those clinical signs and symptoms which we can see and measure. The lockdowns experienced across the globe as a result of COVID-19 have adversely affected those living with UC. This is particularly the case with the pandemic’s indirect disruption of the channels of communication patients rely upon to reach their healthcare professional, meaning simple requests like seeking advice about taking medications are often difficult to arrange.
Despite treatments being readily available, approximately 65-80% of patients with more active UC do not achieve rapid symptom relief or sustained remission and experience recurrent symptoms. This serves to compound the issue as patients are unable to connect with their trusted healthcare professional via pre-pandemic avenues. This disconnection can have a significant mental toll on patients.
Over the summer in Belgium, our hospital surveyed more than 1,000 UC patients to understand how the pandemic had impacted the way they managed their disease and took their treatment. Many of the patients surveyed reported they were considering stopping their treatment due to concerns about the risk of contracting COVID-19 from coming into hospital, rather than take an oral treatment at home. Associated side-effects of current treatments, such as infections, also left them feeling vulnerable to coronavirus.
Open, honest communication is a positive solution
To overcome this hesitancy to attend in-person appointments, we established ongoing 1:1 communication between patients and specialist nurses via emails and phone calls to ensure patients continue to receive relevant information to be able to make informed treatment and care-related decisions.
Making sure patients have a direct channel of communication to healthcare professionals is important to minimise the risk of misinformation uncovered on social media and the wider internet by a patient. Whilst Google is undoubtedly a fantastic resource, it’s important that we continue to empower patients with credible, evidence-based information that is tailored and relevant to their own personal needs. By having access to information suited to their own needs, patients could maintain a positive quality of life throughout the pandemic.
“Many patients reported they were considering stopping their treatment due to concerns about the risk of contracting COVID-19 from coming into hospital, rather than take an oral treatment at home”
This brings me on to an important point; as healthcare professionals, we need to remain steadfast in our commitment to empowering patients with the tools and resources to help them play an active role in their journey. After all, each journey is unique and so the prescribed treatment and care-management approach should also be.
For instance, patients need to understand what might trigger flares of symptoms (like stress, NSAID use), so they can take preventative action to minimise the recurrence of such symptoms. Secondly, they need to be able to recognise red flags present in symptoms such as blood loss, so they can perhaps adjust their treatment dose or call the IBD nurses without the need to visit a hospital or make an appointment. This also provides them with independence and allows them to be an active participant in their treatment.
But it also goes both ways. It’s equally important that we, as healthcare professionals, commit ourselves to better understanding the UC patient experience. That we recognise the emotional and social impact of the disease. The hidden symptoms. Whilst they might be invisible, they are no less debilitating from those we can see and measure. It is possible to empower patients and learn from them at the same time. This can be achieved through open, honest communication, enabling us to provide tailored treatment and care plans that are bespoke to an individual’s needs. By being bold enough to open the discussion and asking patients about their mental health, we can provide a holistic treatment approach to better improve our patients’ quality of life.
About the author
Professor Séverine Vermeire is consultant gastroenterologist, University Hospital Leuven, Belgium, and past-president of the European Crohn’s and Colitis Organisation (ECCO). Dr Vermeire is speaking this week at a Galapagos and Gilead-supported event at the 2020 UEG International Congress for Gastroenterologists on the topic of innovations in Ulcerative Colitis to support patients and healthcare professionals to better manage this disease.