Research at the Emma Children's Hospital

Multiple studies have shown that children with a chronic or life-threatening condition experience a reduced Quality of Life. Therefore it is important to pay attention to issues regarding Quality of Life. A possible way to do this is by assessing Quality of Life, psychosocial functioning and symptoms using questionnaires (Patient Reported Outcome Measures, PROMs) and discussing the outcomes during the consultation with the healthcare provider. This was the main reason to initiate the first research project.

First steps towards the KLIK portal as we know it today, were made in 2003. Prof. dr. Martha Grootenhuis (professor in pediatric psychology) received a grant from the Dutch Cancer Society to start a large study on providing feedback of Quality of Life data in pediatric oncology, the QLIC-ON study. Parents and children completed questionnaires on a laptop prior to visiting the pediatric oncologist. The responses to these questionnaires were printed and handed to the pediatric oncologist, who subsequently discussed them with the child/parent(s). As described in the thesis of dr. Vivian Engelen, emotional and social problems of children with cancer were identified at an earlier stage and were discussed more often when responses to questionnaires were shown to the healthcare provider. Beforehand, healthcare professionals worried consultation time would be lengthened with the use of these questionnaires, however this turned out not to be the case.

After the QLIC-ON study, the KLIK study started in 2008. This PhD project was conducted by dr. Lotte Haverman, under supervision of prof. dr. Martha Grootenhuis and dr. Marion van Rossum (pediatric rheumatologist). During this study about children with juvenile arthritis, the first version of the KLIK website was developed. From that moment, parents and children could complete questionnaires online at home. This made it possible for healthcare providers to assess the responses to the questionnaire online through the KLIK portal and discuss them with their patients. The results of this study were similar to the QLIC-ON study and showed that both healthcare provider and parents were satisfied with the use of KLIK. After these studies the KLIK portal was ready to be used in clinical practice and the implementation process was initiated.

To gain insight into the facilitators and barriers of the implementation within pediatric oncology, a third PhD project was initiated, the IMPROVE study, which was also financed by the Dutch Cancer Society and supervised by prof. dr. Martha Grootenhuis. This study resulted in the thesis of dr. Sasja Schepers. Her research showed that families registered on the KLIK website and regularly completed questionnaires. Discussion of the results by the pediatric oncologist, however, was still insufficient.

Through collaboration of prof. dr. Martha Grootenhuis with a research group in England and a grant from the Brain Tumour Charity, KLIK was translated in English and an English study was set up for the optimal use of KLIK in adolescents with a brain tumor; the PROMOTE study.