The VOICES study is delighted to announce some key outputs from research investigating how best to deliver effective services for people living with vasculitis.
People with rare rheumatic diseases such as systemic vasculitis report an uphill struggle to navigate healthcare systems that are not designed to manage complex, rare conditions. Care is organised in different ways across the UK and currently there are no standards to guide what services should be in place.
The VOICES study set out to provide evidence of how best to deliver effective services that will improve health outcomes and experiences of care for people living with vasculitis.
Main study publication
We have recently published the main findings from the VOICES study in The Lancet Rheumatology:
- Hollick et al, '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' (2024)
This is the first study to identify the key parts of health care services that can improve experiences of care and health outcomes for people living with rare autoimmune conditions.
The ability to see new patients with suspected vasculitis quicky within one week, the presence of a nurse-led advice line for patients (i.e. a dedicated telephone line for patients to access advice about their condition), seeing patients in a cohorted clinic (alongside people with similar conditions or needs) and having access to nurse-led clinics were associated with fewer serious infections and emergency admissions to hospital.
When a patient’s healthcare included regular meetings of the different healthcare professionals involved in their care (multi-disciplinary team meetings), this was also associated with fewer serious infections and emergency hospital admissions to hospital.
You can listen to and download a podcast ‘In conversation with… Dr Rosemary Hollick’, the study’s Chief Investigator, to hear more about the study.
The paper is also accompanied by a Plain Language Summary, and infographic detailing the key findings.
Findings from the VOICES study are already being used to inform changes to the way services for people with vasculitis are organised. The recommendations are being used to develop clinical service standards and guidelines, and strategies to overcome the difficulties to making this happen in practice.
‘Stop ticking boxes: it just doesn’t work’
As with all our research at the Epidemiology Group, public contributors were key members of the VOICES study team.
The Lancet Rheumatology have published a companion piece in which VOICES public contributors, Lynn Laidlaw and Mo McBain, discuss their frustrations in trying to navigate disjointed and ineffective care pathways not designed to support people with complex rare autoimmune conditions, and the importance of patient and public involvement in research, decision making and service provision.
You can read the article in full on The Lancet Rheumatology’s website here (note: a free-sign up is required to access this content).
You can find out more about the VOICES study here.