New study shows how to improve health outcomes and care for thousands living with rare conditions

New study shows how to improve health outcomes and care for thousands living with rare conditions

New research from the University of Aberdeen has for the first time provided 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 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 many specialists.  

While vasculitis is not curable and can keep coming back, 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 but there are currently no standards to guide what services should be in place for rare conditions.  

The VOICES study, led by Dr Rosemary Hollick from the University of Aberdeen and funded by Versus Arthritis, set out to address this by examining how best to improve care for people living with vasculitis.  

The research, which is published today (Tuesday 21 May) in Lancet Rheumatology, 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. 

The study used interviews with people living with vasculitis and healthcare staff to understand how healthcare is currently planned, carried out and sustained, and what good care for people with vasculitis looks like.  

The study found that good care for people living with vasculitis is when healthcare teams: 
• respond to illness quickly (including getting a diagnosis quickly, providing urgent treatment and rapid access to care for flare-ups of the condition); 
• provide continuity of care (seeing the same clinician, team and sharing of information across different teams); 
• support people to make decisions about their care (shared decision making). 
 
The researchers looked at the key components of healthcare services needed to achieve this. This included timely access to services, coordinated healthcare, and timely access to experts. 

Dr Rosemary Hollick said: “By analysing national data on hospital admissions and deaths, along with survey data from vasculitis services, we were able to look at whether patients looked after in a service which had these key components had better health outcomes. 

“We found that when a new patient with suspected vasculitis waits less than a week to see a vasculitis expert, and there is a nurse-led advice line for patients, there were fewer serious infections and emergency admissions. A nurse advice line is a dedicated telephone line for patients to access advice about their condition. They were an invaluable source of advice for patients when they experienced a flare of their condition and meant they could quickly access help. 
 
“In terms of coordinated healthcare, when a patient is treated in a healthcare setting alongside people with similar conditions or needs (in ‘a cohorted clinic’), and there are clinics led by nurses, there were fewer serious infections and emergency admissions to hospital. Nurse-led clinics offered patients more time to discuss issues that mattered to them and supported holistic care. 
 
“We also found when a patient’s healthcare team regularly hosted meetings with the different healthcare professionals involved in their care (multi-disciplinary team meetings), there were fewer serious infections and emergency hospital admissions to hospital.  

“Delivering healthcare in this way helps healthcare teams work better together and makes people living with vasculitis feel safer, however, access to these key areas vary across the UK and Ireland, for example, only 52% of services who were surveyed as part of the study reported having a specialist vasculitis nurse working within their service; 48% had a nurse-led advice line for patients; 36% held nurse-led clinics; and 62% had access to vasculitis multi-disciplinary team meeting.” 

Findings from the study are already being used to inform changes to the way services for people with vasculitis are organised as the authors’ recommendations are being used to develop clinical service standards and guidelines, and strategies to overcome the barriers to achieving this in practice. 
 
Going forward, the findings may also help the many thousands of people living with other rare autoimmune conditions who share similar problems when accessing healthcare. 

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