In recent months, Research Partnership’s Mariel Metcalfe alongside her Living With team have been conducting an in-depth multi-country study into the experiences of those living with rheumatoid arthritis. The study was carried out amongst patients in Europe, Canada and Japan to gain insights into the ways in which patients react to their diagnosis, manage their treatment and the possible support they hope to see in the future.
An interesting trend that emerged during the course of the research was the differing social attitudes towards illness between patients living in Japan compared to those in Europe and Canada. Japanese patient’s daily lives are impacted differently to those in other countries, possibly due to pre-existing stigmas and social attitudes. In this article, we examine these differences, consider why they might occur and propose how we can use this understanding to improve global treatment solutions and marketing of existing and pipeline pharmaceuticals.
Rheumatoid arthritis is a painful form of arthritis that significantly affects the joints, causing debilitating pain both physically and mentally, especially during a flare. It has a considerable impact on quality of life, that sees sufferers sleeping patterns, work and leisure time greatly altered. Carrying out basic tasks can become extremely strenuous and even simply leaving the house can become difficult for many.
During the research carried out for the Japan report, Research Partnership found that the ability to work had the biggest impact on patients’ lives (37% of respondents felt that impact to work was significantly impacted). By comparison, the UK and France named sleep quality as the most impactful, followed closely by leisure activities. Japanese patients also voiced their concerns surrounding their performance at work and stated that others’ perceptions of their abilities was especially important to them. One respondent detailed in an interview: “Because of my continuous symptoms, I feel a big handicap at work (such as using a PC, taking a memo and making phone calls). I feel people think that my work performance has gone down because of RA.” This anxiety could possibly be linked to the societal shame that comes from having to give up work permanently; something sociologists have long believed could be at the center of the growing rate of mental illness in Japan. In addition to the mental impact, the physical aspects of RA may also be elevated due to the stress of feeling incompetent, which adversely affects the ability to sleep or rest, resulting in taking more days off work. Hence, the feeling of rheumatoid arthritis being a vicious cycle of mental and physical strain for patients.
There is clearly a significant negative impact resulting from Japanese patients’ inability to perform in the workplace because of their rheumatoid arthritis, unsurprising given the more insecure workplace of today. Japan’s ‘lifetime employment’ system, in which male college graduates at large firms have traditionally been guaranteed employment until retirement, could definitely become more unstable following two consecutive financial crises and new employment laws.
Losing a job has therefore become a destructive social stigma in Japan that has since been linked to the rise in mental health issues and adult suicide statistics, some of which have been directly correlated to job loss (one study reports a 70% increase in suicide since 2009 with unemployment being one of the largest factors). In the same study, it was also found that involuntary unemployment had an even larger effect on individual’s mental health because it is out of their control, reflected by the experiences of those forced to stay home because of the pain of their rheumatoid arthritis.
In 2017, it was reported that 43% of employed American adults spend at least some of their time working remotely; this is compared to only 4% in Japan due to the supposed loss of productivity that may be found outside of an office environment The Ministry of International Affairs released a report in 2016 declaring that there had been an increase in companies offering the ability to work from home or ‘telecommuting’ (rising from 11.4% to 16.2% in the space of one year) but remote working is still a new idea and is far from the norm. It is therefore unsurprising that suffering an illness that often leads to bed rest and staying home, such as MS, rheumatoid arthritis and cystic fibrosis, does not fit with the traditional Japanese working culture. This hypothesis is supported by the data collated by the Research Partnership as the majority of the sample population in full-time work or study (67%) take an average of 6 days off per month as a direct result of their condition or even leave the workplace entirely. A high proportion of those interviewed claimed that they have felt obliged to leave the workplace, citing an inability to carry on with their usual role because of their prevailing physical symptoms.
Griffiths et al also acknowledged this problem in their 2006 study exploring mental health awareness on a global level. They found that the recorded levels of personal stigma in Japan are far greater than elsewhere, and attitudes towards mental health including anxiety and minor depression are much more negatively perceived than in countries such as the UK or US. Depression is a common side effect of those living with rheumatoid arthritis due to the attached uncertainty, with 37% of Japanese respondents claiming that flare-ups are often caused by stress and anxiety, leading to feelings of depression and a lack of normality. Patients reported feeling distressed, afraid, anxious and helpless when first presenting symptoms to a GP, with a large focus on the fear of what was to come in the future.
Physicians and pharma should address this relationship between chronic illness and depression, which remains prevalent in rheumatoid arthritis. The symptoms associated with depression often include fatigue, loss of appetite and disrupted sleeping patterns, which can often be overlooked by doctors or simply associated with the symptoms of their existing illness. Depression must be addressed as quickly as possible to provide patients with the treatment they need, whether this is pharmacological or psychosocial. By treating quickly, the underlying depressive symptoms associated with prolonged medical illness are reinforced as a legitimate side effect, reducing stigma and helping patients realize that what they are feeling is not unusual. As well as improving quality of life, it has been proven that when treating depression in patients with a chronic illness, there is a positive effect on the progression of disease due to the effect on the body’s biologic indicators.
The positive impact of mental health screening for those living with rheumatoid arthritis may be an effective way to help ease the social stigmas and risk to mental health faced in Japan, but also around the world. Having a positive mindset may not only improve patient’s wellbeing and quality of life, but also help ease symptoms that are worsened by anxiety and depression.