Abstract
Objective To develop, validate and test the performance of patient reported outcomes (PROs) in a short patient questionnaire (<5 min) to assess the multidimensional aspects of orofacial symptoms related to juvenile idiopathic arthritis (JIA) from ≥10 years.
Methods The study was conducted by an interdisciplinary task force from the Temporomandibular joint Juvenile Arthritis Working Group (TMJaw). The project consisted of a multi-phased approach including: 1) Conceptual phase with online international survey of 167 healthcare workers, 2) item generation and drafting of preliminary questionnaire(s) (face validity), 3) cognitive script interview and probing (content validity, n=16 patients with JIA), 4) assessment of construct validity (convergence and divergence, n=53 patients with JIA), 5) test of reliability, 6) test of clinical performance and psychometric characteristics (n=95 patients with JIA).
Results Seven PROs were included in the final patient questionnaire: (1) pain frequency, (2) pain intensity, 3) pain location, 4) jaw function, 5) specific questions related to symptoms and dysfunction, 6) changes in face and jaw pain since last visit, 7) changes in jaw function since last visit. Eighty percent of the patients were able to complete the questionnaire in less than 5 minutes.
Conclusion We have developed and validated a short patient questionnaire to assess the multidimensional aspects of JIA-related orofacial symptoms. The PROs included in our questionnaire show acceptable validity and reliability. The questionnaire is applicable to routine monitoring of subjects with JIA, as well as future research studies.
