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Extended Report
Health-related utility values of patients with primary Sjögren's syndrome and its predictors
  1. Dennis Lendrem1,
  2. Sheryl Mitchell1,
  3. Peter McMeekin2,
  4. Simon Bowman3,
  5. Elizabeth Price4,
  6. Colin T Pease5,
  7. Paul Emery5,
  8. Jacqueline Andrews5,
  9. Peter Lanyon6,
  10. John Hunter7,
  11. Monica Gupta7,
  12. Michele Bombardieri8,
  13. Nurhan Sutcliffe8,
  14. Costantino Pitzalis8,
  15. John McLaren9,
  16. Annie Cooper10,
  17. Marian Regan11,
  18. Ian Giles12,
  19. David Isenberg12,
  20. Saravanan Vadivelu13,
  21. David Coady14,
  22. Bhaskar Dasgupta15,
  23. Neil McHugh16,
  24. Steven Young-Min17,
  25. Robert Moots18,
  26. Nagui Gendi19,
  27. Mohammed Akil20,
  28. Bridget Griffiths1,
  29. Wan-Fai Ng1,21,
  30. on behalf of the UK primary Sjögren's Syndrome Registry
  1. 1Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
  2. 2Institute of Health and Society, Newcastle University, UK
  3. 3University Hospital Birmingham, Birmingham, UK
  4. 4Great Western Hospitals NHS Foundation Trust, Swindon, UK
  5. 5Section of Musculoskeletal Disease, Leeds Institute of Molecular Medicine, University of Leeds & NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds Teaching Hospitals Trust, Leeds, UK
  6. 6Nottingham University Hospital, Nottingham, UK
  7. 7Gartnavel General Hospital, Glasgow, UK
  8. 8Barts and the London NHS Trust & Barts and the London School of Medicine and Dentistry, UK
  9. 9NHS Fife, Whyteman's Brae Hospital, Kirkcaldy, UK
  10. 10Royal Hampshire County Hospital, Winchester, UK
  11. 11Royal Derby Hospital, Derby, UK
  12. 12University College London Hospitals NHS Foundation Trust, London, UK
  13. 13Queen Elizabeth Hospital, Gateshead, UK
  14. 14Sunderland Royal Hospital, Sunderland, UK
  15. 15Southend University Hospital, UK
  16. 16Royal National Hospital for Rheumatic Diseases, Bath, UK
  17. 17Portsmouth Hospitals NHS Trust, UK
  18. 18Aintree University Hospitals, Liverpool, UK
  19. 19Basildon Hospital, Basildon, UK
  20. 20Royal Hallamshire Hospital, Sheffield, UK
  21. 21Musculoskeletal Research Group, Institute of Cellular Medicine & NIHR Biomedical Research Centre for Ageing and Chronic Diseases, Newcastle upon Tyne, UK
  1. Correspondence to Dr Wan-Fai Ng, Musculoskeletal Research Group, Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne NE2 4HH, UK, Wan-Fai.Ng{at}


Objectives EuroQoL-5 dimension (EQ-5D) is a standardised preference-based tool for measurement of health-related quality of life and EQ-5D utility values can be converted to quality-adjusted life years (QALYs) to aid cost-utility analysis. This study aimed to evaluate the EQ-5D utility values of 639 patients with primary Sjögren's syndrome (PSS) in the UK.

Methods Prospective data collected using a standardised pro forma were compared with UK normative data. Relationships between utility values and the clinical and laboratory features of PSS were explored.

Results The proportion of patients with PSS reporting any problem in mobility, self-care, usual activities, pain/discomfort and anxiety/depression were 42.2%, 16.7%, 56.6%, 80.6% and 49.4%, respectively, compared with 5.4%, 1.6%, 7.9%, 30.2% and 15.7% for the UK general population. The median EQ-5D utility value was 0.691 (IQR 0.587–0.796, range −0.239 to 1.000) with a bimodal distribution. Bivariate correlation analysis revealed significant correlations between EQ-5D utility values and many clinical features of PSS, but most strongly with pain, depression and fatigue (R values>0.5). After adjusting for age and sex differences, multiple regression analysis identified pain and depression as the two most important predictors of EQ-5D utility values, accounting for 48% of the variability. Anxiety, fatigue and body mass index were other statistically significant predictors, but they accounted for <5% in variability.

Conclusions This is the first report on the EQ-5D utility values of patients with PSS. These patients have significantly impaired utility values compared with the UK general population. EQ-5D utility values are significantly related to pain and depression scores in PSS.

  • Sjagren's Syndrome
  • Qualitative research
  • Epidemiology

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