Development and evaluation of a new questionnaire for rating perceived participation1

Objective : To develop a questionnaire for self-rated perceived participation in various life areas and to evaluate its reliability and validity. Design : Validation and test—retest study including multiple questionnaire-development steps. Setting : Neurological rehabilitation centre. Participants : One hundred and fifteen consecutive patients with progressive neurological diseases on the rehabilitation centre's waiting list were eligible to take part in the study; 85 completed. Twenty-two professionals within neurological rehabilitation also took part. Main measures : Reproducibility, internal consistency, content validity and clinical utility of the Rating of Perceived Participation (ROPP) questionnaire. Results : The ROPP questionnaire focuses on (1) patient's perceived participation (22 items selected from categories of the participation domains of the International Classification of Functioning, Disability, and Health), (2) patient's satisfaction with the participation level and the desired support for changing it, and (3) patient's selection of the three domains where improvement is most desired. The reproducibility of the perceived-participation items was moderate to good; (weighted kappa ≥0.70 for all but two items) and for satisfaction, desired support, and selected domains it was good or very good (kappa >0.70 for all but in total three items). Test—retest agreement (intraclass correlation (ICC)(1,1) = 0.97) and internal consistency (Cronbach's α = 0.90) for the total score were high. The content validity and clinical utility were good. Conclusions : The ROPP questionnaire has sufficient psychometric reliability and validity and promises to be a useful questionnaire in neurological rehabilitation. Further research is needed to establish criterion validity and sensitivity to change.