Skip to main content
Top
Published in:

Open Access 25-04-2024 | Psoriatic Arthritis | Original Research

Elevating the Standard of Care for Patients with Psoriatic Arthritis: ‘Calls to Action’ from a Multistakeholder Pan-European Initiative

Authors: Iris Verbinnen, Emilio Monte-Boquet, Detlev Parow, Fabienne Lacombe, Andrew Pothecary, Arno W. R. van Kuijk, Laura Harrington, Edita Müllerová, Andreas Pinter, Ulrike Erstling, Andrea Tomasini, Philip S. Helliwell

Published in: Rheumatology and Therapy | Issue 3/2024

Login to get access

Abstract

Introduction

Psoriatic arthritis (PsA) is a complex, progressive, and often debilitating disease. Despite recent advances in treatment, numerous unmet needs in patient care persist. Rheumacensus is a multistakeholder, pan-European initiative designed to identify ways to elevate the standard of care (SoC) and treatment ambition for patients with PsA, using the perspectives of three key stakeholder groups: patients, healthcare professionals (HCPs) and payors.

Methods

Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in PsA and an area of focus for the project, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting which used consensus statements as inspiration to generate ‘Calls to Action’ (CTA)—practical measures which, if implemented, could elevate the SoC for patients with PsA.

Results

The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was “patient empowerment through education on the disease and treatment options available, to enable patient involvement in management”. Four key themes emerged from the Delphi process: patient empowerment, patient knowledge and sources of education, patient–HCP consultations, and optimal initial treatment. Statements within these themes informed 12 overarching CTA, which focus on the need for a multistakeholder approach to implementing a paradigm shift towards patient-centred care and improved outcomes for patients with PsA.

Conclusion

Rheumacensus has identified shortcomings in the current SoC for patients with PsA and provides a foundation for change through practical CTA. It is hoped that all stakeholders will now take practical steps towards implementing these CTA across Europe to elevate the SoC for patients with PsA.
Appendix
Available only for authorised users
Literature
1.
go back to reference Baum EW, Schwartzman S. ALIGN PsA: advancing a multidisciplinary approach in PsA. Semin Cutan Med Surg. 2018;37(6s):S125–34.CrossRefPubMed Baum EW, Schwartzman S. ALIGN PsA: advancing a multidisciplinary approach in PsA. Semin Cutan Med Surg. 2018;37(6s):S125–34.CrossRefPubMed
3.
go back to reference Gladman DD, Antoni C, Mease P, Clegg DO, Nash P. Psoriatic arthritis: epidemiology, clinical features, course, and outcome. Ann Rheum Dis. 2005;64(Suppl 2):ii14–7. Gladman DD, Antoni C, Mease P, Clegg DO, Nash P. Psoriatic arthritis: epidemiology, clinical features, course, and outcome. Ann Rheum Dis. 2005;64(Suppl 2):ii14–7.
4.
go back to reference Garrido-Cumbrera M, Hillmann O, Mahapatra R, et al. Improving the management of psoriatic arthritis and axial spondyloarthritis: roundtable discussions with healthcare professionals and patients. Rheumatol Ther. 2017;4(2):219–31.CrossRefPubMedPubMedCentral Garrido-Cumbrera M, Hillmann O, Mahapatra R, et al. Improving the management of psoriatic arthritis and axial spondyloarthritis: roundtable discussions with healthcare professionals and patients. Rheumatol Ther. 2017;4(2):219–31.CrossRefPubMedPubMedCentral
5.
go back to reference Haugeberg G, Michelsen B, Kavanaugh A. Impact of skin, musculoskeletal and psychosocial aspects on quality of life in psoriatic arthritis patients: a cross-sectional study of outpatient clinic patients in the biologic treatment era. RMD Open. 2020;6(1):e001223. Haugeberg G, Michelsen B, Kavanaugh A. Impact of skin, musculoskeletal and psychosocial aspects on quality of life in psoriatic arthritis patients: a cross-sectional study of outpatient clinic patients in the biologic treatment era. RMD Open. 2020;6(1):e001223.
6.
7.
go back to reference Feldman SR, Zhao Y, Shi L, Tran MH, Lu J. Economic and comorbidity burden among moderate-to-severe psoriasis patients with comorbid psoriatic arthritis. Arthritis Care Res (Hoboken). 2015;67(5):708–17.CrossRefPubMed Feldman SR, Zhao Y, Shi L, Tran MH, Lu J. Economic and comorbidity burden among moderate-to-severe psoriasis patients with comorbid psoriatic arthritis. Arthritis Care Res (Hoboken). 2015;67(5):708–17.CrossRefPubMed
8.
go back to reference Favier G, Gladman DD, Merola JF, Armstrong AW, Boehncke WH, Helliwell PS. Benchmarking care in psoriatic arthritis—the QUANTUM report: a report from the GRAPPA 2016 annual meeting. J Rheumatol. 2017;44(5):674–8.CrossRefPubMed Favier G, Gladman DD, Merola JF, Armstrong AW, Boehncke WH, Helliwell PS. Benchmarking care in psoriatic arthritis—the QUANTUM report: a report from the GRAPPA 2016 annual meeting. J Rheumatol. 2017;44(5):674–8.CrossRefPubMed
9.
go back to reference Betteridge N, Boehncke WH, Bundy C, Gossec L, Gratacós J, Augustin M. Promoting patient-centred care in psoriatic arthritis: a multidisciplinary European perspective on improving the patient experience. J Eur Acad Dermatol Venereol. 2016;30(4):576–85.CrossRefPubMed Betteridge N, Boehncke WH, Bundy C, Gossec L, Gratacós J, Augustin M. Promoting patient-centred care in psoriatic arthritis: a multidisciplinary European perspective on improving the patient experience. J Eur Acad Dermatol Venereol. 2016;30(4):576–85.CrossRefPubMed
10.
go back to reference Gossec L, Baraliakos X, Kerschbaumer A, et al. EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies: 2019 update. Ann Rheum Dis. 2020;79(6):700–12.CrossRefPubMed Gossec L, Baraliakos X, Kerschbaumer A, et al. EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies: 2019 update. Ann Rheum Dis. 2020;79(6):700–12.CrossRefPubMed
11.
go back to reference Koren J, Lambert JLW, Thomsen SF, McAteer H, Fabbrocini G, Corazza V, et al. Elevating the standard of care for patients with psoriasis: “calls to action” from epicensus, a multistakeholder pan-European initiative. Dermatol Ther (Heidelb). 2023;13(1):245–68.CrossRefPubMed Koren J, Lambert JLW, Thomsen SF, McAteer H, Fabbrocini G, Corazza V, et al. Elevating the standard of care for patients with psoriasis: “calls to action” from epicensus, a multistakeholder pan-European initiative. Dermatol Ther (Heidelb). 2023;13(1):245–68.CrossRefPubMed
12.
go back to reference Luelmo J, Gratacós J, Moreno Martínez-Losa M, et al. A report of 4 years of experience of a multidisciplinary unit of psoriasis and psoriatic arthritis. Reumatol Clin. 2014;10(3):141–6.CrossRefPubMed Luelmo J, Gratacós J, Moreno Martínez-Losa M, et al. A report of 4 years of experience of a multidisciplinary unit of psoriasis and psoriatic arthritis. Reumatol Clin. 2014;10(3):141–6.CrossRefPubMed
13.
go back to reference Sacristán JA, Dilla T, Díaz-Cerezo S, Gabás-Rivera C, Aceituno S, Lizán L. Patient-physician discrepancy in the perception of immune-mediated inflammatory diseases: rheumatoid arthritis, psoriatic arthritis and psoriasis. A qualitative systematic review of the literature. PLoS One. 2020;15(6):e0234705. Sacristán JA, Dilla T, Díaz-Cerezo S, Gabás-Rivera C, Aceituno S, Lizán L. Patient-physician discrepancy in the perception of immune-mediated inflammatory diseases: rheumatoid arthritis, psoriatic arthritis and psoriasis. A qualitative systematic review of the literature. PLoS One. 2020;15(6):e0234705.
14.
go back to reference Furst DE, Tran M, Sullivan E, et al. Misalignment between physicians and patient satisfaction with psoriatic arthritis disease control. Clin Rheumatol. 2017;36(9):2045–54.CrossRefPubMedPubMedCentral Furst DE, Tran M, Sullivan E, et al. Misalignment between physicians and patient satisfaction with psoriatic arthritis disease control. Clin Rheumatol. 2017;36(9):2045–54.CrossRefPubMedPubMedCentral
15.
go back to reference Adebajo AO, Akintayo RO. Patient educational needs and challenges in psoriatic arthritis. Curr Opin Rheumatol. 2021;33(4):356–62.CrossRefPubMed Adebajo AO, Akintayo RO. Patient educational needs and challenges in psoriatic arthritis. Curr Opin Rheumatol. 2021;33(4):356–62.CrossRefPubMed
16.
go back to reference van der Veen S, Evans N, Huisman M, Welch Saleeby P, Widdershoven G. Toward a paradigm shift in healthcare: using the international classification of functioning, disability and health (ICF) and the capability approach (CA) jointly in theory and practice. Disabil Rehabil. 2023:45(14):2382–89. van der Veen S, Evans N, Huisman M, Welch Saleeby P, Widdershoven G. Toward a paradigm shift in healthcare: using the international classification of functioning, disability and health (ICF) and the capability approach (CA) jointly in theory and practice. Disabil Rehabil. 2023:45(14):2382–89.
17.
go back to reference Helliwell PS, Favier G, Gladman DD, et al. Best-practice indicators in psoriatic disease care. J Rheumatol Suppl. 2019;95:38–45.CrossRefPubMed Helliwell PS, Favier G, Gladman DD, et al. Best-practice indicators in psoriatic disease care. J Rheumatol Suppl. 2019;95:38–45.CrossRefPubMed
18.
19.
go back to reference Krist AH, Tong ST, Aycock RA, Longo DR. Engaging patients in decision-making and behavior change to promote prevention. Stud Health Technol Inform. 2017;240:284–302.PubMedPubMedCentral Krist AH, Tong ST, Aycock RA, Longo DR. Engaging patients in decision-making and behavior change to promote prevention. Stud Health Technol Inform. 2017;240:284–302.PubMedPubMedCentral
Metadata
Title
Elevating the Standard of Care for Patients with Psoriatic Arthritis: ‘Calls to Action’ from a Multistakeholder Pan-European Initiative
Authors
Iris Verbinnen
Emilio Monte-Boquet
Detlev Parow
Fabienne Lacombe
Andrew Pothecary
Arno W. R. van Kuijk
Laura Harrington
Edita Müllerová
Andreas Pinter
Ulrike Erstling
Andrea Tomasini
Philip S. Helliwell
Publication date
25-04-2024
Publisher
Springer Healthcare
Published in
Rheumatology and Therapy / Issue 3/2024
Print ISSN: 2198-6576
Electronic ISSN: 2198-6584
DOI
https://doi.org/10.1007/s40744-024-00664-3

Keynote series | Spotlight on managing health in obesity

Obesity is a major contributor to cardiorenal metabolic disease, but its impact extends throughout the body. Understand how obesity can affect other organ systems and impact treatment, and whether weight-loss measures improve outcomes.

Prof. Eva L. Feldman
Prof. Jonette Keri
Developed by: Springer Medicine
Watch now
Video

Women’s health knowledge hub

Elevate your patient care with our comprehensive, evidence-based medical education on women's health. Designed to help you provide exceptional care for your female patients at every stage of life, we provide expert insights into topics such as reproductive health, menopause, breast cancer and sex-specific health risks and precision medicine.

Read more

Keynote webinar | Spotlight on advances in lupus

  • Live
  • Webinar | 27-05-2025 | 18:00 (CEST)

Systemic lupus erythematosus is a severe autoimmune disease that can cause damage to almost every system of the body. Join this session to learn more about novel biomarkers for diagnosis and monitoring and familiarise yourself with current and emerging targeted therapies.

Join us live: Tuesday 27th May, 18:00-19:15 (CEST)

Prof. Edward Vital
Prof. Ronald F. van Vollenhoven
Developed by: Springer Medicine
Register now
Webinar