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The journey of the non-radiographic axial spondyloarthritis patient: the perspective of professionals and patients

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Abstract

Objective

Explore the perspective of patients and professionals regarding non-radiographic axial spondyloarthritis (nr-axSpA) and to define the patient’s journey from diagnosis to treatment in order to identify unmet needs during the process.

Methods

A qualitative study was carried out in two phases. In the first part, five focus groups were held with rheumatologists, orthopaedist, physiotherapists, primary care physicians (PCP), radiologists and six narrative interviews with nr-axSpA patients. In the second part, a nominal group meeting was held to detect which needs were not covered in the nr-axSpA (all of whom had collaborated in the previous phase).

Results

The topics discussed with professional groups and patients were the appropriateness of the term and concept of nr-axSpA, the management of low back pain and inflammatory back pain in routine clinical practice, complementary test and the problem of waiting lists and finally the unmet needs both from a practitioner’s and a patient’s perspective. The final group explored solutions to the problems based on what was discussed in the first part of the project. Some of these solutions were strengthening relations between specialties, implementing high resolution consultations, rethinking the disability scales, offering better information to patients, designing resource maps and using different strategies to promote knowledge of the disease.

Conclusion

Many different perspectives on the same disease have revealed the difficult journey of the patient with suspected nr-axSpA, while identifying problems and solutions.

Key Points

• Diagnosis of nr-AxSpA among health professionals outside rheumatology may lead to numerous turns and difficulties in the patient’s journey.

• The impact of delays and complications in the journey to diagnosis is not quantified but directly affects the state of well-being and health of patients.

• Multidisciplinary care is far from a reality. Primary care (key specialists in any chronic condition), radiologists, orthopaedists, and non-physicians such as physiotherapists and psychologists are generally excluded from dealing with these patients, and often have to do their work outside of physicians, rather than working together in a truly patient-centred medicine.

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Acknowledgements

The authors would like to thank the investigators for their contribution in the focus groups and to the patients involved for their collaboration in the interviews.

Funding

This work was supported by Novartis Farmacéutica S.A.

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Authors and Affiliations

  1. InMusc, Madrid, Spain

    Teresa Otón & Loreto Carmona

  2. Novartis Farmacéutica SA, Barcelona, Spain

    Carlos Sastre

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  1. Teresa Otón
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Corresponding author

Correspondence to Teresa Otón.

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Conflict of interest

Outside this project, institution (InMusc) has received consultancy honoraria from Abbvie, Astellas, BMS, Gebro Pharma, Lylly, MSD, Pfizer, Roche, Sanofi-Aventis and UCB Pharma. Loreto Carmona and Teresa Oton are full-time employees of InMusc.

Carlos Sastre is a full-time employee of Novartis Farmaceutica S.A.

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Otón, T., Sastre, C. & Carmona, L. The journey of the non-radiographic axial spondyloarthritis patient: the perspective of professionals and patients. Clin Rheumatol 40, 591–600 (2021). https://doi.org/10.1007/s10067-020-05269-z

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  • DOI: https://doi.org/10.1007/s10067-020-05269-z

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