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Development of ASAS quality standards to improve the quality of health and care services for patients with axial spondyloarthritis
  1. Uta Kiltz1,
  2. Robert B M Landewé2,3,
  3. Désirée van der Heijde4,
  4. Martin Rudwaleit5,
  5. Michael H Weisman6,
  6. Nurullah Akkoc7,
  7. Annelies Boonen8,9,
  8. Jan Brandt10,
  9. Philippe Carron11,12,
  10. Maxime Dougados13,14,
  11. Laure Gossec15,16,
  12. Merryn Jongkees17,
  13. Pedro M Machado18,19,
  14. Helena Marzo-Ortega20,
  15. Anna Molto14,21,
  16. Victoria Navarro-Compán22,
  17. Karin Niederman23,
  18. Percival Degrava Sampaio-Barros24,
  19. Gleb Slobodin25,
  20. Filip E Van den Bosch12,26,
  21. Astrid van Tubergen8,
  22. Salima van Weely27,
  23. Dieter Wiek28,
  24. Juergen Braun1
  1. 1 Rheumatology, Rheumazentrum Ruhrgebiet, Ruhr-University Bochum, Herne, Germany
  2. 2 Amsterdam Rheumatology Center, AMC, Amsterdam, The Netherlands
  3. 3 Rheumatology, Zuyderland MC, Heerlen, The Netherlands
  4. 4 Rheumatology, Leiden University Medical Center, Leiden, The Netherlands
  5. 5 Internal Medicine and Rheumatology, Klinikum Bielefeld Rosenhöhe, Bielefeld, Germany
  6. 6 Division of Rheumatology, Department of Medicine, David Geffen School of Medicine, Los Angeles, California, USA
  7. 7 Department of Medicine, Division of Rheumatology, Celal Bayar University School of Medicine, Manisa, Turkey
  8. 8 Internal Medicine, Division of Rheumatology, Maastrich University Medical Center, Maastricht, The Netherlands
  9. 9 Care and Public Health Research Institute (CAPHRI), Maastricht, The Netherlands
  10. 10 Rheumatology, Private Practice, Berlin, Germany
  11. 11 Rheumatology, Ghent University Hospital, Ghent, Belgium
  12. 12 VIB Inflammation Research Center, Ghent, Belgium
  13. 13 Hopital Cochin, Rheumatology, Université Paris Descartes, Paris, France
  14. 14 INSERM (U1153): Epidémiologie Clinique et Biostatistiques, PRES Sorbonne Paris-Cité, Paris, France
  15. 15 Institut Pierre Louis d'Epidémiologie et de Santé Publique (iPLESP), UMR S 1136, Sorbonne Universite, Paris, France
  16. 16 APHP, Rheumatology department, Hopital Universitaire Pitie Salpetriere, Paris, France
  17. 17 Patient Research Partner, Amsterdam, The Netherlands
  18. 18 MRC Centre for Neuromuscular Diseases, University College London, London, UK
  19. 19 Rheumatology, University College London Centre for Rheumatology, London, UK
  20. 20 NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals Trust and Leeds Institute of Rheumatic and Musculoskeletal Disease, University of Leeds Faculty of Medicine and Health, Leeds, UK
  21. 21 Rheumatology, Hopital Cochin, paris, Ile de France, France
  22. 22 Department of Rheumatology, University Hospital La Paz, IdiPaz, Madrid, Spain
  23. 23 School of Health Professions, Institute of Physiotherapy, Zurich University of Applied Sciences, Winterthur, Switzerland
  24. 24 Faculdade de Medicina da Universidade de São Paulo e Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, Sao Paulo, Brazil
  25. 25 Department of Internal Medicine A, Bnai Zion Medical Center, Technion, Haifa, Israel
  26. 26 Department of Internal Medicine and Pediatrics, Ghent University Faculty of Medicine and Health Sciences, Gent, Belgium
  27. 27 Reade, Centre for Rehabilitation and Rheumatology, Amsterdam, The Netherlands
  28. 28 Patient Research Partner, Huenxe, Germany
  1. Correspondence to Dr Uta Kiltz, Rheumatology, Rheumazentrum Ruhrgebiet, Ruhr-University Bochum, Herne 44801, Germany; uta.kiltz{at}elisabethgruppe.de

Abstract

Objectives The Assessment of SpondyloArthritis International Society (ASAS) aimed to develop a set of quality standards (QS) to help improve the quality of healthcare provided to adult patients affected by axial spondyloarthritis (axSpA) worldwide.

Methods An ASAS task force developed a set of QS using a stepwise approach. First, key areas for quality improvement were identified, discussed, rated and agreed on. Thereafter, areas were prioritised and statements for the most important key areas were phrased on consensus. Appropriate quality measures were defined to allow quantification of the QS at the community level.

Results The ASAS task force, consisting of 20 rheumatologists, two physiotherapists and two patients, selected and proposed 34 potential key areas for quality improvement which were then commented by 140 ASAS members and patients. Within that process three new key areas came up, which led to a re-evaluation of all 37 key areas by 120 ASAS members and patients. Five key areas were identified as most important to determine quality of care: referral including rapid access, rheumatology assessment, treatment, education/self-management and comorbidities. Finally, nine QS were agreed on and endorsed by the whole ASAS membership.

Conclusions ASAS successfully developed the first set of QS to help improving healthcare for adult patients with axSpA. Even though it may currently not be realistic to achieve the QS in all healthcare systems, they provide high-quality of care framework for patients with axSpA that should be aimed for.

  • spondyloarthritis
  • ankylosing spondylitis
  • quality Indicators
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Footnotes

  • Handling editor Josef S Smolen

  • Twitter @nurullahakkoc, @PhilippeCarron, @pedrommcmachado

  • Correction notice This article has been corrected since it published Online First. The author, Merryn Jongkees, name has been corrected.

  • Contributors JB, UK, RBML, MR, DvdH, MHW designed the study. All authors have contributed to the development of the quality standard set by participating in the meetings. UK and JB contributed to data management and analysis of the web-based surveys. JB, UK, RBML, MR, DvdH, MHW draft the publication and all authors were involved in revising the article critically. The final version of the report was seen and approved by all authors.

  • Funding This study was funded by Assessment of SpondyloArthritis international Society (ASAS). PMM is supported by the National Institute for Health Research (NIHR) University College London Hospitals (UCLH) Biomedical Research Centre (BRC). HMO is supported by the National Institute for Health Research (NIHR) Leeds Biomedical Research Centre (BRC).

  • Competing interests AB received research grants to her department from Abbvie and Celgene and honoraria for lectures or consulting fees form UCB, Janssen, Sandoz, Novartis and Eli-Lilly. JB: honoraria for talks, advisory boards, paid consultancies and grants from studies from Abbvie, Amgen, BMS, Boehringer, Celgene, Celltrion, Centocor, Chugai, EBEWE Pharma, Medac, MSD (Schering-Plough), Mundipharma, Novartis, Pfizer (Wyeth), Roche, Sanofi-Aventis, UCB. PC: honoraria for talks, advisory boards, paid consultancies from Celgene, MSD (Schering-Plough), Novartis, Pfizer (Wyeth), Roche, Sanofi-Aventis, UCB. MD: honoraria for lectures and advisory board meetings for Pfizer, Abbvie, Merck, UCB, Lilly, Novartis. LG research grants: Pfizer, UCB, Lilly, Bristol-Myers Squibb; honoraria for lectures and advisory board meetings from AbbVie, Amgen, Biogen, Celgene, Janssen, Lilly, MSD, Novartis, Pfizer, Sandoz, Sanofi-Aventis, UCBU. UK: received grant and research support and consultancy fees from AbbVie, Biogen, Chugai, Eli Lilly, Grünenthal, Janssen, MSD, Novartis, Pfizer, Roche and UCB. RBML: honoraria for lectures and advisory board meetings for AbbVie, Celgene, Galapagos, Janssen, Lilly, Novartis, Pfizer, UCBP. PMM has received consulting/speaker’s fees from Abbvie, BMS, Celgene, Janssen, MSD, Novartis, Pfizer, Roche and UCB. HM-O: grants from Janssen, Novartis. Speaking, honoraria from Abbvie, Celgene, Eli-Lilly, Janssen, Novartis, Pfizer and UCB. AM: honoraria for lectures and advisory board meetings for AbbVie, BMS, Janssen, MSD, Novartis, Sanofi, Pfizer and UCB.VN-C: consultancy/speaker/research grants from: Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche, UCB. educational/research grants: SAR, SER, SORCOM, EULAR, ASAS. MR: honoraria for presentations or advisory board meetings from Abbvie, Celgene, BMS, Janssen, Lilly, MSD, Novartis, Pfizer, UCB. PS-B: honoraria for presentations or advisory board meetings from Abbvie, Boehringer Ingelheim, Janssen, Novartis, UCB. GS: honoraria for lectures and/or advisory board meetings from Abbvie, Lilly, Novartis, Sanofi, Roche. DvdH: consulting fees AbbVie, Amgen, Astellas, AstraZeneca, BMS, Boehringer Ingelheim, Celgene, Daiichi, Eli-Lilly, Galapagos, Gilead, Glaxo-Smith-Kline, Janssen, Merck, Novartis, Pfizer, Regeneron, Roche, Sanofi, Takeda, UCB Pharma. Director of Imaging Rheumatology AvT received research grants from Pfizer, Abbvie, UCB, Novartis and Biogen and consulting fees from Novartis, Jansen-Cilag, Pfizer, MW: consulting fees from Novartis, Lilly, UCB.

  • Patient and public involvement statement Patient partners supported the study at each stage of the project. Patient partners collaborated with us for the design of the project, the informational material to support the web-based surveys, and were actively involved in the identification of the key areas for quality improvement and the phrasing of the quality statements. Patients who participated in the web-based surveys helped us to understand the gaps in quality of care from the patient’s perspective. At the end of the study, the patient partners commented on the phrasing of the quality rationale and measure as well as a critical revision of the manuscript.

  • Patient consent for publication Not required.

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

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.

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