Vasculitis Outcomes In relation to Care ExperienceS (VOICES)

Duration: TBC
Funder: Versus Arthritis
Chief investigator: Dr Rosemary Holliick
Other UoA investigators: Professor Corri Black (Aberdeen Centre for Health Data Science), Professor Louise Locock (Health Services Research Unit)
Other co-investigators: Dr Neil Basu (University of Glasgow), Professor Mark Little (Trinity College, Dublin), University of Oxford Healthtalk team

Individuals with rare rheumatic diseases report an uphill struggle to navigate healthcare systems not designed to manage complex diseases. Whilst delays in receiving a diagnosis, inconsistent access to relevant expertise and uncoordinated care are not unique to rare rheumatic disease, the consequences in this group of individuals can be devastating.

A good example is systemic vasculitis, a group of devastating but treatable multi-organ illnesses caused by inflammation of the blood vessels. Across the UK there are significant differences in how these conditions are looked after. Our own pilot data from a selection of specialist centres also reveals clinically important differences in outcomes such as heart disease, stroke and infections. There is increasing momentum within the UK to implement commitments made in the UK Rare Disease Strategy, and within Europe to improve services for those with rare diseases. However, there are currently no robust studies to help us decide how best to organise and deliver services for those with adult onset rare rheumatic disease.

 

Further information

What are the aims of this research?

This study aims to understand which key elements of care delivery are associated with health outcomes of prime importance to individuals with vasculitis. Information will be used to help us better design services and ensure equal access to effective, coordinated care and support.

We will gather information from people with vasculitis and their healthcare records to examine differences in healthcare outcomes across different services in Scotland. Working with healthcare professionals and patients we will understand how vasculitis services are currently organised and how this relates to outcomes. We will also explore what aspects of care patients and staff value most and how they feel care could be improved.

How will this research benefit patients?

By the end of this study we will have developed, in conjunction with patients, healthcare professionals and decision makers, a timely set of recommendations that will directly inform policy decisions on how to improve services for patients with rare diseases. We will use our learning from patient interviews to develop an accessible online information resource for people with systemic vasculitis, their families and carers in collaboration with the University of Oxford and the Healthtalk website team (www.healthtalk.org).

How can I get involved?

Our qualitative researcher Avril Nicoll is interviewing 30-50 people from around the UK about their experiences of vasculitis. These interviews will feature on the healthtalk.org website so that others can benefit and learn from them. We are using Microsoft Teams to do the interviews, so anyone with a smartphone, tablet, laptop or desktop computer can take part. Please get in touch with Avril (email voices@abdn.ac.uk or telephone 07741 900 965) for more details.

 

We are grateful to Vasculitis UK and the Lauren Currie Twilight Foundation for their support with the VOICES study and are committed to involving people with personal experience of vasculitis at every stage. If you would like to offer occasional or one-off advice, or join our advisory panel, please ask Avril (as above) for more information.

Study team and funding

This study is led by Dr Rosemary Hollick at the University of Aberdeen, in collaboration with Corri Black (Aberdeen Centre for Health Data Science), Louise Locock (Health Services Research Unit, University of Aberdeen), Neil Basu (University of Glasgow), Mark Little (Trinity College, Dublin) and the University of Oxford Healthtalk team (www.healthtalk.org).

Mohsen Rezaei Hemami is Research Fellow on the data linkage aspect of VOICES, and Avril Nicoll is Research Fellow for the qualitative aspects (Healthtalk interviews and organisational case studies).

The study is funded by Versus Arthritis.

Contact details

For further information please contact Rosemary Hollick at rhollick@abdn.ac.uk.