Reliability of questionnaires after an intensive motor intervention for children with cerebral palsy (CP): a randomized trial

Paradis, Julie [UCL] Dispa, Delphine [UCL] De Montpellier Agnès [Clinique Universitaire Saint-Luc] Ebner Karestinos, Daniela Silvia [UCL] Araneda Oyaneder, Rodrigo [UCL] Saussez, Geoffroy [UCL] Renders, Anne [Clinique Universitaire Saint-Luc] Arnould, Carlyne [Haute Ecole Louvain en Hainaut] Bleyenheuft, Yannick [UCL] et al.[show all]

Introduction: Parents-reported questionnaires have for long been demonstrated as a valid estimation of activities of daily living in children with CP, particularly with good congruence with expert's estimations in routine assessments. However, it is unknown whether during therapeutic interventions (intensive rehabilitation, surgery) a bias may be induced by the (in) satisfaction of the parents after the process. This is the aim of this study. Patients and method: 40 children with CP were randomized in a control group (CG) following their conventional treatment or a treatment group (TG) receiving a 2-weeks intensive intervention (HABIT-ILE). Children were assessed at baseline, 2 weeks later and 3 months after. Primary outcomes were the ABILHAND-Kids and the ACTIVLIM-CP rated by parents and 2 blind experts (home-based videotapes). Level of agreement between raters was investigated using intraclass correlation coefficient (ICC). Results: Agreement between the 2 experts was excellent for all assessments in both groups. Before treatment, agreement between parents and experts was good to excellent in both groups. After treatment, agreement between parents and experts remained good to excellent in the CG while it decreased to a moderate level in the TG (parents overestimating child's performance). Three months after, the same phenomenon was observed. Conclusion: Parents and experts have a similar perception of activities of daily living status at baseline, without intensive treatment. Their perception is less congruent after an intensive rehabilitation process. Therefore, it might be recommended in future studies with intensive interventions to use blind rated home-videotaped items of the questionnaires instead of the usual parents-reported version.