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Original article
Initial validation and results of the Symptoms in Persons At Risk of Rheumatoid Arthritis (SPARRA) questionnaire: a EULAR project
  1. Marian H van Beers-Tas1,2,
  2. Marieke M ter Wee3,4,
  3. Lilian H van Tuyl3,
  4. Bertha Maat1,
  5. Wijnanda Hoogland1,
  6. Aase H Hensvold5,
  7. Anca I Catrina5,
  8. Erika Mosor6,7,
  9. Tanja A Stamm6,
  10. Axel Finckh8,9,
  11. Delphine S Courvoisier8,9,
  12. Andrew Filer10,11,
  13. Ilfita Sahbudin10,11,
  14. Rebecca J Stack12,
  15. Karim Raza13 and
  16. Dirkjan van Schaardenburg1,2
  1. 1 Amsterdam Rheumatology and Immunology Center, Reade, Amsterdam, The Netherlands
  2. 2 Amsterdam Rheumatology and Immunology Center, Amsterdam Medical Center, Amsterdam, The Netherlands
  3. 3 Amsterdam Rheumatology and Immunology Center, VU University Medical Center, Amsterdam, The Netherlands
  4. 4 Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands
  5. 5 Karolinska University Hospital, Stockholm, Sweden
  6. 6 Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Vienna, Austria
  7. 7 Division of Rheumatology, Department of Internal Medicine III, Medical University of Vienna, Vienna, Austria
  8. 8 Division of Rheumatology, University Hospital of Geneva, Geneva, Switzerland
  9. 9 Department of Medical Specialties, University of Geneva, Geneva, Switzerland
  10. 10 University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
  11. 11 Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK
  12. 12 Department of Psychology, Nottingham Trent University, Nottingham, UK
  13. 13 Department of Rheumatology, Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK
  1. Correspondence to Dr Marian H van Beers-Tas; m.h.tas{at}amc.uva.nl

Abstract

Objectives To describe the development and assess the psychometric properties of the novel ‘Symptoms in Persons At Risk of Rheumatoid Arthritis’ (SPARRA) questionnaire in individuals at risk of rheumatoid arthritis (RA) and to quantify their symptoms.

Methods The questionnaire items were derived from a qualitative study in patients with seropositive arthralgia. The questionnaire was administered to 219 individuals at risk of RA on the basis of symptoms or autoantibody positivity: 74% rheumatoid factor and/or anticitrullinated protein antibodies positive, 26% seronegative. Validity, reliability and responsiveness were assessed. Eighteen first degree relatives (FDR) of patients with RA were used for comparison.

Results Face and content validity were high. The test-retest showed good agreement and reliability (1 week and 6 months). Overall, construct validity was low to moderate, with higher values for concurrent validity, suggesting that some questions reflect symptom content not captured with regular Visual Analogue Scale pain/well-being. Responsiveness was low (small subgroup). Finally, the burden of symptoms in both seronegative and seropositive at risk individuals was high, with pain, stiffness and fatigue being the most common ones with a major impact on daily functioning. The FDR cohort (mostly healthy individuals) showed a lower burden of symptoms; however, the distribution of symptoms was similar.

Conclusions The SPARRA questionnaire has good psychometric properties and can add information to currently available clinical measures in individuals at risk of RA. The studied group had a high burden and impact of symptoms. Future studies should evaluate whether SPARRA data can improve the prediction of RA in at risk individuals.

  • rheumatoid arthritis
  • patient perspective
  • qualitative research

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors MHvBT, MMtW, LHvT, KR, DvS: substantial contributions to the conception or design of the work or the acquisition, analysis or interpretation of data for the work. All authors contributed to the acquisition of the data. MHvBT, MMtW, KR, DvS: drafting the work or revising it critically for important intellectual content. All authors: final approval of the version to be published; agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

  • Funding This project was funded by EULAR (grant number EPI013).

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement SPARRA questionnaire: The questionnaire is freely available and has been included in this manuscript. All of the study data can be available if requested.

  • Presented at The manuscript was based on work previously presented at both the ACR conference 2016 and EULAR conference 2017 and published as abstracts: http://acrabstracts.org/abstract/first-report-of-symptoms-using-the-symptoms-in-persons-at-risk-of-rheumatoid-arthritis-sparra-questionnaire/; http://scientific.sparx-ip.net/archiveeular/?searchfor=sparra20questionnaire&view=1&c=a&item=2017FRI0113.

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