Development and Validation of a Self-Administered Questionnaire Measuring Essential Knowledge in Patients With Axial Spondyloarthritis

Catherine Beauvais; Bruno Pereira; Thao Pham; Christelle Sordet; Pascal Claudepierre; Françoise Fayet; Daniel Wendling; Félicie Costantino; Laurence Carton; Laurent Grange; Martin Soubrier; Nathalie Legoupil; Aleth Perdriger; Isabel Tavares; Emmanuelle Dernis; Laure Gossec; Malory Rodère

doi:10.3899/jrheum.211314

Development and Validation of a Self-Administered Questionnaire Measuring Essential Knowledge in Patients With Axial Spondyloarthritis

J Rheumatol. 2023 Jan;50(1):56-65. doi: 10.3899/jrheum.211314. Epub 2022 Jul 15.

Authors

Catherine Beauvais¹, Bruno Pereira², Thao Pham³, Christelle Sordet⁴, Pascal Claudepierre⁵, Françoise Fayet⁶, Daniel Wendling⁷, Félicie Costantino⁸, Laurence Carton⁹, Laurent Grange¹⁰, Martin Soubrier⁶, Nathalie Legoupil¹¹, Aleth Perdriger¹², Isabel Tavares¹³, Emmanuelle Dernis¹⁴, Laure Gossec¹⁵, Malory Rodère⁶

Affiliations

¹ C. Beauvais, MD, Service de Rhumatologie Centre Hospitalier Universitaire Saint Antoine, Sorbonne Université, AP-HP, Paris; catherine.beauvais@aphp.fr.
² B. Pereira, PhD, Département de Biostatistique Centre Hospitalier Universitaire Gabriel-Montpied, Clermont-Ferrand.
³ T. Pham, MD, PhD, Service de Rhumatologie, Centre Hospitalier Universitaire Sainte Marguerite, Université Aix Marseille, Marseille.
⁴ C. Sordet, MD, PhD, Service de Rhumatologie, Hôpitaux Universitaires Strasbourg, Strasbourg.
⁵ P. Claudepierre, MD, PhD, Service de Rhumatologie, Centre Hospitalier Universitaire Henri Mondor, AP-HP, Université Créteil, Paris.
⁶ F. Fayet, BSc, M. Soubrier, MD, PhD, M. Rodère, BSc, Service de Rhumatologie, Centre Hospitalier Universitaire Gabriel-Montpied, Clermont-Ferrand.
⁷ D. Wendling, MD, PhD, Service de Rhumatologie, Centre Hospitalier Régional Universitaire de Besançon, and EA 4266 EPILAB, Université Bourgogne Franche-Comté, Besançon.
⁸ F. Costantino, MD, PhD, Service de Rhumatologie, Hôpital Universitaire Ambroise Paré, AP-HP, Université Paris Saclay, Boulogne-Billancourt.
⁹ L. Carton, Association AFLAR (Association Française de Lutte Anti-Rhumatismale), Paris.
¹⁰ L. Grange, MD, PhD, Service de Rhumatologie, Centre Hospitalier Universitaire Grenoble Alpes, Echirolles.
¹¹ N. Legoupil, MD, Service de Rhumatologie, Centre Hospitalier Universitaire Cochin, AP-HP, Paris.
¹² A. Perdriger, MD, PhD, Service de Rhumatologie, Centre Hospitalier Universitaire, Rennes.
¹³ I. Tavares, Service de Rééducation, Hôpital Universitaire Montpellier, Montpellier.
¹⁴ E. Dernis, MD, MSc, Service de Rhumatologie, Hôpital Le Mans, Le Mans.
¹⁵ L. Gossec, Sorbonne Université, Institut Pierre Louis d'Epidémiologie et de Santé Publique, INSERM, and Service de Rhumatologie, Centre Hospitalier Universitaire Pitié Salpétrière, Sorbonne Université AP-HP, Paris France.

PMID: 35840152
DOI: 10.3899/jrheum.211314

Abstract

Objective: To develop and validate a patient knowledge questionnaire regarding axial spondyloarthritis (axSpA).

Methods: Knowledge considered essential for patients with axSpA was identified through Delphi rounds among rheumatologists, healthcare professionals (HCPs), and patients, then reformulated to develop the knowledge questionnaire. Cross-sectional validation was performed in 14 rheumatology departments to assess internal validity (Kuder-Richardson coefficient), external validity, acceptability, reproducibility (Lin concordance correlation coefficient), and sensitivity to change (knowledge score before vs after patient education sessions and effect size).

Results: The Spondyloarthritis Knowledge Questionnaire (SPAKE) is a self-administered 42-item questionnaire with a 32-item short form, both scored 0 to 100, assessing knowledge of disease, comorbidities, pharmacological treatments, nonpharmacological treatments, self-care, and adaptive skills. In the validation study (130 patients; 67 [51.5%] male, mean age 43.5 [SD 12.9] yrs), the mean (SD) score of the long-form questionnaire was 71.6 (15.4), with higher scores (better knowledge) in nonpharmacological treatments and adaptive skills and lower scores in cardiovascular comorbidity and pharmacological treatments. Acceptability was good, with no missing data; the internal validity coefficient was 0.85. Reproducibility was good (0.81, 95% CI 0.72-0.89). SPAKE showed good sensitivity to change; scores were 69.2 (15.3) then 82.7 (14.0) after patient education sessions (Hedges effect size = 0.92, 95% CI 0.52-1.31).

Conclusion: SPAKE is a knowledge questionnaire for patients with axSpA, developed with the involvement of HCPs and patients and reflecting current recommendations for the management of axSpA. SPAKE will be useful in assessing knowledge acquisition and self-management strategies in routine care and research.

Keywords: knowledge questionnaires; patient education; patient therapeutic education; spondyloarthritis.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Axial Spondyloarthritis*
Cross-Sectional Studies
Female
Humans
Male
Reproducibility of Results
Spondylarthritis* / diagnosis
Spondylarthritis* / therapy
Surveys and Questionnaires