Anxiety and embarrassment are a vicious circle for people with Crohn’s disease. The psychological and emotional effects of this complex and often unrecognised condition not only dominate patients’ lives but raise the risk of further outbreaks.
Understanding and empathy around Crohn’s are in short supply. It is a relatively low-profile disease, with periods of remission broken by highly disruptive flare-ups. The very nature of those flare-ups tends to ensure that Crohn’s stays below the radar.
To put it bluntly, Crohn’s is all about going to the toilet: easy access to toilet facilities; the urgency, frequency and quality of bowel movements; and the ever-present fear of a humiliating mishap.
These considerations put considerable stress on people with Crohn’s disease. As stress itself can trigger or aggravate symptoms, dealing with anxiety and embarrassment is a vital component of non-medical interventions in Crohn’s.
Crohn’s is a chronic inflammatory bowel disease linked to genetics and malfunctioning of the immune system. It affects as much as 0.32% of the population in both Europe and the US . That may only be the tip of the iceberg, though.
In many cases the condition goes undiagnosed for years. Anxiety and embarrassment may contribute to this delay.
From our Living with Crohn’s patient survey, conducted across the US and Europe, we learnt that 60% of patients had waited at least six months after first experiencing symptoms before consulting a doctor. These patients generally felt anxious, afraid and embarrassed when first seeing their doctor about Crohn's symptoms.
People with Crohn’s are typically middle-aged and in full- or part-time employment. So the consequences of symptom flare-ups are felt in the workplace as well as at home or socially. Our survey found that employed respondents took an average of 4.6 days off work a month due to Crohn’s disease.
The most common symptoms of Crohn’s, such as diarrhoea, abdominal pains, fever, fatigue or weight loss, are strongly related to actual or feared embarrassment and the circumstances in which it may arise. Eating out, for example, can be a minefield: is the food likely to trigger a flare-up? Are toilets readily available? Are the patient’s friends/family aware of the situation?
A large majority of Crohn’s patients deal with these symptoms either daily or 1-2 times per week. We found that in 77%, Crohn’s had a significant or moderate impact on general well-being. It had a comparable impact on ability to ‘feel normal’ in 72% of respondents; capacity for exercise/fitness in 64%, sleep patterns in 64%; and appetite in 61%.
The disease touches people on a number of levels: emotionally, in their desire to ‘feel normal’; socially, by restricting or complicating family or other collective activities; and physically, by undermining work, study or exercise. For the active professionals living with Crohn’s, these consequences take a heavy toll.
Just explaining them to family, friends or co-workers is stressful enough, particularly when the disease is effectively invisible and the practical demands of managing symptoms are outside many people’s comfort zone.
While the immunosuppressants and biologics commonly prescribed for Crohn’s reduce symptom severity, these symptoms rarely disappear.
In the survey, 70% of patients still had flare-ups on a daily, weekly or fortnightly basis. Other than those occurring daily, flare-ups lasted two days on average and were mainly caused by stress and diet.
This persistence and variability of symptoms, as well as disincentives such as cost and side-effects, can undermine treatment adherence. We found that 57% of patients on sc biologics and 60% of those on iv biologics had missed doses.
Role for HCPs
Healthcare professionals can play a significant role in educating patients about the importance of keeping to their treatment regimen.
They can also offer support – both practical and emotional – as well as advice and targeted interventions to help manage symptom triggers, particularly in relation to stress, diet and exercise.
Generally, survey respondents felt they had a good relationship with their doctor, who took their concerns seriously. But they would like more time with their doctor and more realistic suggestions on managing Crohn’s.
Role for pharma
The pharmaceutical industry can help to stimulate dialogue by raising education and awareness around Crohn’s. Dedicated online communities in particular offer a safe place where people with Crohn’s can talk about their condition without fear of mockery or misunderstanding
Around one third of patients in the survey were involved locally or nationally with support groups for Crohn’s disease. Where respondents did use support groups, 56% followed these online. The same percentage sourced information on Crohn’s from the internet, second only to consulting their doctor (74%).
The industry needs to explore and implement online platforms that will appeal to people with Crohn’s seeking a true reflection of, and outlet for, their frustrations with the disease. Blogs, real patient testimonies and chat rooms all have a role to play here.
Clearly much remains to be done, in terms of therapeutic advances, education/awareness, and support mechanisms, if people with Crohn’s are to shake off the anxiety and embarrassment that make effective management of this unpredictable and exhausting disease such a challenge.
Living With offers comprehensive and cost effective insight into the patient journey from pre-diagnosis to stabilisation. These reports are based on quantitative market research studies conducted amongst large samples of patients living with specific chronic illnesses.
 World Gastroenterology Organisation Global Guidelines: Inflammatory Bowel Disease. Updated August 2015. Retrieved from http://www.worldgastroenterology.org/guidelines/global-guidelines/inflammatory-bowel-disease-ibd/inflammatory-bowel-disease-ibd-english.