Only the results of the KLIK study can determine whether the online KLIK application has been effective. Nevertheless, here we can describe our first experiences with the KLIK application and make recommendations for future practice.
Since 2006 we have undertaken comprehensive research with the aim of realizing a web-based application that could systematically direct attention to HRQOL issues in daily paediatric clinical practice. The web-based PROfile appears to be an efficient application to achieve this goal.
In the context of using PROs in clinical practice, some issues should be considered. The use of the internet seems to be an efficient way to monitor HRQOL. However, the Netherlands has the highest rate of internet access in Europe. In 2009, 90 percent of all Dutch households had internet access [27
]. Our experience with the KLIK study confirmed this. To accommodate the small number of patients without internet access at home an internet access point can be installed in the outpatient department. It is often assumed that completing the questionnaires and discussing HRQOL issues is very time consuming. However, the completion of the HRQOL questionnaire takes the child (or parents) no more than ten minutes [28
]. In addition, several studies have demonstrated that discussing HRQOL issues does not increase the duration of the consultation [3
In our opinion, to optimize the effect of the KLIK PROfile it is necessary to educate the paediatrician in its use. Due to lack of time, paediatricians are often not adequately trained, if at all, in the use of PROs [7
]. Physicians are willing to discuss psychosocial problems with their patients but they often report that they consider themselves inadequately trained to discuss such health issues [29
]. Thus, a training programme that focuses on discussing psychosocial aspects of chronic illness can be very valuable.
We incorporated the PedsQL questionnaire into the KLIK study. The PROfile questionnaire is used as a tool to monitor the domains of HRQOL which are important during childhood development. We emphasize that the PROfile cannot be used as a screening instrument to identify children at risk of psychosocial adjustment problems, but we are therefore extending the website with the Strengths and Difficulty Questionnaire [30
] which can be used as a screening instrument.
The implementation of a web-based PROfile in clinical practice creates new challenges and opportunities. Depending on patient health care needs, members of a multidisciplinary team can use the KLIK PROfile individually or during a multidisciplinary consultation. In the future, the PROfile might be used not only by other practitioners (for example, psychologists or nurses), but also by different patient groups. The KLIK PROfile can be applied in all types of specialized and dedicated paediatric clinics. In addition, we assume that the PROfile can include both a generic part (such as the PedsQL) and a disease-specific questionnaire if available. The HRQOL scores can be compared to healthy norm scores or even to population-specific scores when enough data are available.
In addition to improving the care given to chronically ill children, we suggest that more attention should be paid to the needs of the parents. Children never visit a paediatrician on their own. The psychological mechanisms in paediatrics are diverse and complex and they influence the interaction between the parent, the child and the whole family system. For clinical practice, it is important not only to assess the illness of the child but also to evaluate the burden on the parents, their stress levels and reactions to the uncontrollable aspects of illness [32
]. Parent Reported Outcomes could be an additional component in the implementation of PROs in the care of chronically ill children. Other studies have shown that parents can have major QOL problems related to the illness of their child [33