New educational video helps South Asian rheumatoid arthritis patients manage condition and understand treatment pathway
Rheumatoid arthritis (RA) patients of South Asian origin now have extra help in living with a painful and incurable condition – thanks to a new educational video that encourages them to understand when and why they need to move from standard treatment to treatment with a biologic.
Produced by the National Rheumatoid Arthritis Society (NRAS) as part of the University of Birmingham’s partnership with the national charity, the short educational video aims to help patients with RA from minority ethnic backgrounds understand the treatment pathway and the role of biologics in controlling the condition. The video could also help people with RA in India and rheumatology teams.
Patient Joti Reehal features in the charity’s video – which is mostly in Hindi with English subtitles. She reflects on her experiences, both positive and negative, in starting treatment with a biologic to manage her condition effectively. Joti shares her story of being an Asian and how her cultural influences contributed to the decision of taking biologic treatment.
The educational video was developed as a result of a research project, led by University of Birmingham expert Dr. Kanta Kumar, which explored South Asians’ perceptions about biologics and related information.
In her latest research into South Asians’ perceptions about biologic treatments, Dr Kumar worked with 20 South Asian patients with RA from Royal Wolverhampton Hospitals NHS Trust and Central Manchester University Hospitals NHS Foundation Trust.
The study – published in Patient Preference and Adherence – investigated South Asian patients’ experiences of using biologics and their satisfaction with information received. Dr Kumar found that patients were worried about using biologics and stopped taking them.
She also found that patients often followed the advice of family and friends or doctors in India, rather than UK-based rheumatology team. Some decided to replace biologics with herbal remedies because of unfounded fears that biologics produced harmful side-effects.
The video features a multidisciplinary approach with contributions from Dr. Kumar and Coventry-based consultant Dr Shirish Dubey.
It is the latest initiative of NRAS’ Apni Jung project, which aims to engage with RA patients within the UK South Asian community – encouraging them not just to seek medical help for their condition but also to gain an understanding about RA and the benefits of continuing to take prescribed medication to improve outcomes.
The Apni Jung project builds on the research of Dr. Kumar, who commented: “Many South Asian patients with RA have limited relevant information about how to effectively manage their condition.
“It’s important to make health services more visible, relevant and accessible to those who need it most - particularly those people who, for reasons of language, culture or health literacy skills may be less able to negotiate about their healthcare needs or successfully navigate the health system.
“Biologic treatments are effective, but expensive, ways of managing RA. We hope that listening to health professionals talking about RA and treatment pathway as well as Joti’s experience of using these drugs will have an impact on other patients within the South Asian community and inspire them to manage their RA as well as their treatment expectations.”
Dr Kumar began working with the NRAS on the Apni Jung project whilst she was working at the University of Manchester studying the impact of RA on the South Asian community.
Ailsa Bosworth MBE, Chief Executive and founder of the NRAS, said: “We hope that by bringing Dr. Kumar’s research to life with this short video and enabling the South Asian communities across the UK and beyond to get the right information in their own language in an engaging way, will enable them to manage their disease better by being more involved and informed about decisions affecting their care and treatment. We welcome the partnership with Birmingham University and anyone else who wishes to support our Apni Jung project.”
For more information or interviews, please contact Tony Moran, International Communications Manager, University of Birmingham on +44 (0) 121 414 8254 or +44 (0)782 783 2312. For out-of-hours enquiries, please call +44 (0) 7789 921 165.
Notes to Editors
- The University of Birmingham is ranked amongst the world’s top 100 institutions, its work brings people from across the world to Birmingham, including researchers and teachers and more than 5,000 international students from over 150 countries.
- The NRAS’ Apni Jung project was launched to coincide with the 2016 British Society for Rheumatology annual congress. The Apni Jung website provides patients with rheumatoid arthritis from minority backgrounds with high-quality educational materials on their condition in Hindi and Urdu, as well as video clips of Asian patients talking about their experiences.
- The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). Due to its targeted focus on RA and JIA, NRAS provides truly expert and wide-ranging services to support, educate and campaign for people living with these complex autoimmune conditions, their families and the health professionals who treat them.
- For more information about NRAS, please contact Michele Le Tissier at firstname.lastname@example.org, phone: 01628 823524