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Health-related quality of life measurement in systemic lupus erythematosus


This programme of work aims to:

  • Develop and evaluate a disease-specific health-related quality of life instrument for adults with systemic lupus erythematosus (LupusQoL).
  • Describe the patient perspective of SLE in relation to Health-related Quality of Life Concepts.
  • Identify whether demographic or clinical factors explain patient-reported health-related quality of life
  • Undertake a systematic review of HRQOL measurement in SLE.
  • Undertake a national multi-centre study to evaluate the sensitivity to change of the LupusQoL investigating its ability to:
    • detect an improvement in HRQoL following effective treatment of a flare,
    • detect deterioration in HRQoL e.g. when treatment has undesirable and troublesome side effects or the patients fail to have their disease controlled by their initial treatment plan and
    • estimate the minimum clinical important difference/s (MCID).

Project lead

  • Professor Janice Abbott

Project staff

  • Dr Chris Sutton
  • Montana Mullen

Dr Lee-Suan Teh, Dr Kathleen MacElhone, East Lancashire NHS Trust; Dr Ian Bruce, Central Manchester University Hospital Trust; Dr Joanna Shelmerdine, Dr Yasmeen Ahmad, Central Manchester University Hospital Trust; Dr Caroline Gordon, Kate Peers, University of Birmingham; Professor David Isenberg, Ada Franklin-Stevens, Middlesex Hospital, London; Dr Bridget Griffiths, Freeman Hospital, Newcastle; Dr Mohamed Akil, Hallamshire Hospital, Sheffield; Dr Peter Maddison, Ysbyty Gwynedd, Bangor.

NHS Executive North West R&D Directorate (£120,000, 2000-3), Lupus UK (£44,500, 2004-7) and Arthritis UK (£98,727, 2011-14).

MacElhone K, Teh LS, Abbott J. (2006). Quality of life in systemic lupus erythematosus: a review. Lupus;15:633-643.

MacElhone K, Abbott J, Teh LS et al. (2007). The development and validation of a disease-specific quality of life instrument for adults with systemic lupus erythematosus. Arthritis Care and Research 57:972-979..

McElhone K, Abbott J, Gray J & Williams A, Teh LS. Patient perspective of Systemic Lupus Erythematosus in relation to Health-related Quality of Life Concepts. A Qualitative Study. Lupus 2010;19:1640-1647.

McElhone K, Castelino M, Abbott J, Bruce IN, Ahmad Y, Shelmerdine J, Peers K, Isenberg D,Ferenkeh-Koroma A, Griffiths B, Akil M, Maddison P, Gordon C, & Teh LS. The LupusQoL and associations with demographic and clinical parameters in patients with Systemic Lupus Erythematosus (SLE). Journal of Rheumatology 2010;37:2273-2279.

Castelino M, Abbott J, McElhone K, Teh LS. Comparison of the psychometric properties of Health-Related Quality of Life Measures used in adults with systemic lupus erythematosus: A systematic review of the literature. Rheumatology 2013; 52: 684-696.