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Article: The disparity of patient experiences with Crohn’s Disease in Europe and Japan

Mariel Metcalfe, April 2021

Crohns disease shutterstock_1488112844Recent patient research conducted for our ‘Living With’ patient syndicated reports reveals some interesting differences in the treatment of Crohn’s Disease in relation to diagnosis, impact of CD on patients’ lives, management of CD, patients’ relationships with doctors and how patients look for information on CD.

Inflammatory bowel disease, or IBD, describes two conditions: ulcerative colitis and Crohn’s disease (CD). It is estimated that a total of 6.8 million people live with IBD[1] globally, affecting more than 3 million people in Europe and North America[2] and an estimated 220,000 in Japan[3]. Whilst incidence rates are stabilising in western countries, they are rising in industrialising countries in Asia, South America, Eastern Europe and Africa[4].

CD is an autoimmune condition that causes inflammation of the digestive tract. It is a heterogeneous disorder which can have different causes and variable presentation and progression. In the first quarter of 2020, we conducted quantitative and qualitative market research focusing on the patient journey of those living with CD in Europe (France, Germany, Italy, Spain, UK) and Japan. ‘Living With’ reports provide insights solely from patients themselves including their attitudes, perceptions and behaviours related to CD.

With regard to diagnosis, diarrhoea and abdominal pain are the main symptoms for patients in both Europe and Japan which lead them to seek physician assistance. However, in Japan, perianal disease also features prominently as a trigger to presentation. Whilst there is a quicker time to diagnosis in Japan compared to Europe, there is also a higher rate of misdiagnosis with the majority of Japanese patients erroneously diagnosed with other conditions

CD impact on life
CD has a large physical and psychological impact on patients’ lives in both Europe and Japan. The predominant symptoms of diarrhoea and abdominal pain, worsened by unpredictable flares, cause high levels of distress and restrict patients’ lives, especially regarding food choices and their ability to travel.

“It takes a lot of time away from work, friends and family. Psychologically it is hard as well. You can't go out because you need the toilet. I am also very tired all the time.” Female, 54 years old, Italy

“A bad day is when I am laying down the whole day. I only go to the bathroom and just drink water. I really cannot do anything. My household chores cannot be completed and start to accumulate but I cannot do them. So I get even more upset.” Female, 51 years old, Japan

Some differences exist between how European and Japanese patients perceive flares and how CD impacts their lives. Japanese patients tend to suffer flares to a greater degree than their European counterparts. On average they suffer from more flares per year plus a greater proportion perceive their flares to be ‘continuous’.

When we investigate how CD affects patients’ lives, Japanese patients have a greater reluctance to admit that CD is affecting their day-to-day activities compared with European patients, who are more forthright. For example, In Europe, patients consistently highlight the activities that CD impacts the most as the activities they wish to improve on, such as less restrictive food choices and ability to travel, sleep and exercise.

Whilst in Japan some consistency is also seen (e.g. food choices, travel and ability to plan for the future), there are also clear inconsistencies. Only a minority of Japanese patients mention that CD highly impacts their ability to complete everyday activities (e.g. chores), yet half of patients go on to mention that being able to complete daily activities is a priority. While only a quarter of Japanese patients believe CD highly affects their ability to work, half of patients wish for this to be improved.

In Japan, the impact of CD on work and employment is a strong theme in both the quantitative and qualitative findings. It comes as no surprise that patients place a high priority on improving their ability to work, given the high impact of flares on their lives coupled with Japan’s strong work ethic. Both European and Japanese patients take time off work per month due to their CD, but Japanese patients take fewer days off compared to those in Europe.

Based on qualitative interviews, there is also insight into the stress and anxiety Japanese patients endure in the workplace, especially when they do not want to reveal to their work colleagues that they suffer from CD.

“When I go to lunch with my co-workers, for instance for spicy food or Korean BBQ, I don’t usually eat this type of food but I have not told my co-workers, so I feel stressed when I have to do that.” Female, 28 years old, Japan

“I have not told work that I have CD….as I do not want them to remove me or think it could prevent me from carrying out my work….I do not want to be transferred to do other tasks, so I have not told them yet.” Male, 43 years old, Japan

Management of CD
In managing their CD, European and Japanese patients perceive some aspects of their experience with treatments differently. European patients are generally more highly satisfied with their CD treatments compared to Japanese patients, which may reflect Japanese patients’ greater struggle with controlling their flares. Perceptions of treatment drawbacks also feature some important differences. In Europe, treatment side effects are easily the biggest drawback for the majority of patients. For Japanese patients, side effects are mentioned, however other factors such as costs and treatment burden are more frequently raised as issues.

With regard to improvements in CD management, both European and Japanese patients most frequently mention the need for better treatments, however this is more frequently mentioned in Japan (~3/4 of Japanese patients) compared to Europe (~1/2 European patients). Japanese patients in particular need more affordable treatments with better efficacy in reducing flares, preventing surgery and offering long-lasting symptom relief. Both regions want better education about CD for the public and for themselves, as well as a more efficient diagnosis process.

Patient relationship with their doctors and use of information sources
Compared to Japanese patients, European patients have a more positive relationship with their doctor. In Europe, patients feel they can speak to their doctor confidently and that their doctor takes their concerns seriously. Compared to Japanese patients, European patients have a greater tendency to believe that their doctor informs them well about their CD so that they fully understand their condition.

When researching information on CD, European and Japanese patients share some similarities. For both countries, doctors and the Internet are the main sources of CD information, with the doctor being the most highly trusted source. Other CD patients are also perceived as trusted information sources for the small number of European and Japanese patients who mention them.

There are interesting differences in how European and Japanese patients look up CD information. European patients are more likely to trust information from general medical websites compared to Japanese patients. On the other hand, the minority of Japanese patients who visit drug manufacturer websites to look for CD information are more likely to trust these sources compared to European patients.

“If I am searching for medications, I would visit manufacturers’ websites. I try to get the “official” information as much as possible.” Female, 51 years old, Japan

European patients are more likely to seek information proactively, especially when they experience new or more severe symptoms, or when a new treatment is suggested by their doctor. In contrast, approximately a quarter of Japanese patients do not seek any CD information at all, which is a significantly higher figure compared to European patients.

“I have a tendency to look at them when I am having a severe flare-up, because I need to be with people who understand what I am living through, who can share this with me, and as I have no social life it is good to talk to people on the forums.” Female, 39 years old, France

“I sometimes look for articles. I write the word Crohn’s and I see news about it. I especially look for new treatments, because as it has advanced so much, about 15 years ago it was not known to anyone.” Male, 44 years old, Spain

The importance of continued support
The different experiences of European and Japanese CD patients is not surprising. With disparate cultures and healthcare systems, differences are expected. The fact that CD is a heterogeneous disorder means that even those living in the same country or even in the same neighbourhood can have vastly different experiences with it.

Despite the inherent diversity of experiences, it is clear that CD patients require improved treatments and ongoing support with managing their CD. The different attitudes, perceptions, and behaviours of European and Japanese patients toward their CD are important to understand so that not only are their needs identified, but these needs are met in an appropriate manner that resonates with patients’ respective experiences with CD.

[1] Jairath and Feagan, 2020, ‘Global burden of inflammatory bowel disease,’ The Lancet Gastroenterology & Hepatology, vol 5, Issue 1, pp. 2-3

[2] Alatab, S et al. 2019, ‘The global, regional, and national burden of inflammatory bowel disease in 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017,’ The Lancet Gastroenterology & Hepatology, vol 5, Issue 1, pp. 17-30

[3] Okabayashi, S, 2020, ‘Inflammatory Bowel Disease in Japan-Is It Similar to or Different from Westerns?,’ Journal of the Anus, Rectum and Colon, 4(1), pp. 1-13

[4] Jairath and Feagan, 2020, ‘Global burden of inflammatory bowel disease,’ The Lancet Gastroenterology & Hepatology, vol 5, Issue 1, pp. 2-3

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