Depression and fatigue are major problems in UK patients with Sjögren’s syndrome – revealed in new health status survey

The annual European League Against Rheumatism (EULAR) 2012 Congress took place in Berlin this year, and among the highlights was the following report on one of the UKPSSR research studies:

The first report on the health problems encountered by patients with primary Sjögren’s syndrome (PSS) indicates a significant burden in terms of impaired health status compared to the UK general population – with depression and fatigue being the key factors.

Presenting the details of a survey involving 620 patients with PSS, Dr Wan-Fai Ng, (Clinical Senior Lecturer, Musculoskeletal Research Group, Institute of Cellular Medicine, University of Newcastle-upon-Tyne) explained that the survey he and his colleagues carried out used EuroQol (EQ)-5D, an increasingly popular health-related quality of life instrument - but which has not until now been applied to patients with PSS.

Dr Ng said that EQ-5D provides a simple descriptive profile, a single index value for health status and a visual analogue score (VAS). “The key advantages of EQ-5D are that the instrument is preference-based, easy to complete and the value sets can be easily converted to quality adjusted life years (QALYs) to aid cost-utility analysis.”

The proportion of PSS patients reporting any problem in mobility (42.4%), self-care (16.9%), usual activities (56.7%), pain/discomfort (81.1%) and anxiety/depression (49.6%) were far higher than in the UK population as a whole (5.4%, 1.6%, 7.9%, 30.2% and 15.7%, respectively).

The mean VAS score in PSS patients was 59.9, compared to 81.3 for the general population, and further analysis showed that EQ-5D VAS correlated with many clinical features of PSS - most strongly with fatigue, depression and pain.

Among the laboratory measures, only immunoglobulin G (IgG) levels, paraproteins and propionylcarnitine (C3) correlated with EQ-5D VAS.

Dr Ng concluded: “Our data adds to the growing body of evidence that effective management of fatigue is key to improving the health status of PSS patients.”

For further information visit http://www.congresscatchup.com/.

Annual BSSA Meeting 2012

Newcastle is fortunate to welcome the Annual General Meeting of the British Sjögren’s Syndrome Association (BSSA) to the world renowned International Centre for Life on 15^th September, where many eminent members of the medical profession will give their time to address those attending the conference.  The conference is aimed at both patients, their supporters and allied health care professionals.

Sjögren’s Syndrome is the second most common autoimmune rheumatic disease where the body’s immune system attacks parts of the body instead of fighting infection.  In Sjögren’s Syndrome the glands that produce saliva, tears and other secretions become inflamed and as a result can stop working with key symptoms including dry eye and dry mouth.  Chronic fatigue can also be a major factor.  Sjögren’s Syndrome can strike at any age, but most commonly affects women between the ages of 40 and 60 and 90% of cases are female. Despite being discovered in the early 20^th century by the ophthalmologist Henrik Sjogren, the causes remain unknown with limited treatments available.

The BSSA is a charity dedicated to providing support and information to individuals affected by this disease, as well playing a key role in raising awareness.  Support groups operate throughout the UK helping sufferers to cope with the day-to-day challenges of this distressing condition. In addition, Dr Wan-Fai Ng, Newcastle University is the leading researcher for a national registry the ‘United Kingdom Primary Sjögren’s Syndrome Registry’ which is designed to investigate the causes of Sjögren’s syndrome as well as facilitate new clinical trials.

Our local support group the ‘North East Sjögren Support Association’ (NESSA), has over 40 members, and regularly meet at the Freeman Hospital to learn more about this condition as well as to socialise and to support each other. If you wish to know more about NESSA please contact Madge at madge_stokes@hotmail.co.uk .

If you would like further information about the BSSA conference you can email office@bssa.uk.net  or telephone Isabel on 0121 4780222. 

British Sjogrens Syndrome Awareness - Stephen McPhail

McPhail and Venus hope to increase Sjögren's awareness

 

In a video interview with Sky Sports, Stephen McPhail has spoken further of his battle with Sjögren's Syndrome and of his relationship with fellow sufferer, tennis star Venus Williams.

The Cardiff City midfielder speaks of his admiration for Williams, who recently returned from a year out with the rheumatoid disease to win the Ladies’ Doubles competition at Wimbledon.

The interview comes in time for World Sjögren's Day and aims to increase awareness of Sjögren's Syndrome.

To watch the interview, click here.

World Sjögren's Day

The Guardian recently published an interesting piece on Sjögren's Syndrome in preparation for its first World Day on the 23^rd July.

The article contains a lot of useful information and website links looking to raise awareness of the rheumatoid disease.

To read the article in full, click here.

UKPSSR: Aims and Objectives

 
Want to know more about the UK Primary Sjogren's Syndrome Registry?

Click here to read a presentation outlining the Registry’s aims, objectives and development.

Stephen McPhail talks about his battle with Sjogren’s

In an ITV article, Cardiff

City midfielder Stephen McPhail has given insight into how he came to terms with Sjogren’s Syndrome. The Republic of Ireland international discusses the affect the condition has had on his personal life and career as a professional footballer.

McPhail, 32, was diagnosed with Sjogren’s only months after recovering from Stage 2 malt lymphoma and is not the only high-profile athlete tormented by the illness. After being forced to withdraw from the US Open last August, it was revealed that tennis star Venus Williams also suffers from the rheumatic disease (see below).

To read the article about Stephen McPhail, click here.

PUBMED Clinical Trials and Sjogren's Syndrome

Useful PUBMED listing of clinical trials reported in the last three years.