The study provides first-ever evidence of how best to deliver effective services that will improve health outcomes and experiences of care for the thousands of people across the UK living with rare conditions such as vasculitis.
Vasculitis is a group of rare conditions that cause inflammation of the blood vessels. There are different types of vasculitis, and the problems that result can range from mild to very severe, and can be life-threatening. It can affect many different parts of the body, and even people with the same type of vasculitis can be affected in different ways and need different care from several different specialists.
While vasculitis is not curable, it can be controlled using medicines to suppress the immune system. Early diagnosis and effective and timely treatments are important to prevent damage to the body. Care for people with vasculitis is organised in different ways across the UK and currently there are no standards to guide what services should be in place for rare conditions.
The VOICES study (led by Dr Rosemary Hollick and funded by Versus Arthritis) set out to address this issue by examining how best to improve care for people living with vasculitis. This is the first study to identify the key parts of health care services that improve experiences of care and health outcomes for people living with vasculitis, and we are delighted to report that the study has just published a keypaper in The Lancet Rheumatology: 'Identifying key health system components associated with improved outcomes to inform the re-configuration of services for adults with rare autoimmune rheumatic diseases: a mixed-methods study'.
Findings from the study are already being used to inform changes to the way services for people with vasculitis are organised; for example, the recommendations are being to develop clinical service standards and guidelines, and strategies to overcome the barriers to achieving this in practice. The findings are also likely applicable to the many thousands of people living with other rare autoimmune conditions who share similar problems when accessing healthcare.
VOICES patient and public contributors played an integral role in the study as research partners, helping us to design the study, analyse the information collected, and reflect on the findings. They helped develop recommendations for healthcare practice and create online resources for people with vasculitis, including filmed stories from people living with vasculitis.
Further information on the study can be found on the VOICES study webpage.