Kwaliteit van Leven in Kaart (KLIK): De eerste toepassing van een web-based terugkoppeling van kwaliteit-van-leven-gegevens bij kinderen

Introduction. Children with a chronic illness often experience Health Related Quality of Life (HRQOL) problems. These problems are not always known or systematically discussed by paediatricians. For children and parents it is important to pay attention to HRQOL systematically. This is possible with the use of patient-reported outcomes (PROs). The patient completes a HRQOL questionnaire, and answers are summarized in a PROfile. Subsequendy, the paediatrician discusses this PROfile with the patient during the doctor's visit. This is the first study to evaluate the use of online PROs in paediatrics. Www.hetklikt.nu. In the Emma Children's Hospital, the KLIK study is performed in children with juvenile idiopathic arthritis (JIA). The use of PROs in clinical practice is often confronted with logistical problems. A web-based application can overcome these problems; therefore the website www.hetklikt.nu was developed. With the use of this website, children and parents can complete HRQOL questionnaires at home and paediatricians can retrieve the PROfile online. KLIK study. The KLIK study was launched in August 2008 and examines whether the use of the KLIK PROfile by paediatric rheumatologists has a positive effect on satisfaction with care, communication, advice and referrals. In this multicenter study, the doctor's visit without the use of the profile (control group) is compared to the doctor's visit with the use of the profile (intervention group). The results of the intervention group are compared to the control group. To avoid contamination a sequential cohort design was chosen. Discussion. In the Emma Children's Hospital, profound research was done to realize an application to systematically pay attention to HRQOL issues in daily clinical practice for children with a chronic illness. A web-based PROfile appears to be an appropriate application to achieve this goal.