RT Journal Article
SR Electronic
T1 Development and Validation of a Self-Administered Questionnaire Measuring Essential Knowledge in Patients With Axial Spondyloarthritis
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 56
OP 65
DO 10.3899/jrheum.211314
VO 50
IS 1
A1 Catherine Beauvais
A1 Bruno Pereira
A1 Thao Pham
A1 Christelle Sordet
A1 Pascal Claudepierre
A1 Françoise Fayet
A1 Daniel Wendling
A1 Félicie Costantino
A1 Laurence Carton
A1 Laurent Grange
A1 Martin Soubrier
A1 Nathalie Legoupil
A1 Aleth Perdriger
A1 Isabel Tavares
A1 Emmanuelle Dernis
A1 Laure Gossec
A1 Malory Rodère
YR 2023
UL http://www.jrheum.org/content/50/1/56.abstract
AB 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.