New survey shows significant impact of lupus on emotional and mental well-being
World Lupus Federation global survey data highlights the need for education, specialist care and emotional support services for people living with lupus.
More than nine in ten (93%) people living with lupus have indicated that their disease has had an effect on their emotional and mental wellbeing, according to data from a global online survey of nearly 5,000 people with lupus released by the World Lupus Federation (WLF) for World Lupus Day on May 10th. Over 60% of respondents say the effect has been ‘significant’.
The psychological impact of lupus can have as much of an impact on a person’s quality of life as the physical complications of the disease. The survey also revealed that over one-third (38%) of UK respondents believe their doctor has either ‘poor understanding’ or ‘no understanding’ of the emotional impact that lupus can have. Over 75% of respondents in the UK would also be interested in participating in a lupus support group that focuses on helping to improve emotional or mental well-being.
“The results from this survey indicate that many people with lupus are not being offered sufficient services to help support their emotional well-being, alongside the treatment of their physical symptoms,” says Chris Maker, CEO of LUPUS UK. “We are calling on health service providers to do more to make patients aware of the information and support we can offer as a charity through our online communities, Regional Groups and telephone contacts”.
Approximately 1 in 1,000 people in the UK have a form of lupus; an incurable autoimmune disease with a wide range of symptoms that can impact on every aspect of the lives of those living with it. Lupus causes inflammation that can damage any part of the body, potentially leading to organ failure. World Lupus Day on May 10th is a global observance which serves to unite people affected by lupus and raise awareness of the impact that this poorly understood disease can have.
About the Survey
The 12-question online survey was published in nine languages and was posted on the World Lupus Federation’s website from 15th April to 29th April 2019. Its availability was promoted and linked through social media channels managed by the Federation and its global affiliates, including LUPUS UK. 4,559 surveys were completed sufficiently by people indicating they had lupus and could be included in the final data analysis.
About the World Lupus Federation
The World Lupus Federation is leading nearly 200 lupus patient groups in the annual observance of World Lupus Day on May 10th with the objective of raising awareness of the impact of lupus, addressing public misconceptions about the disease and making lupus a priority with the World Health Organisation. http://www.worldlupusfederation.org/