Anne Westerweel

Aim and execution of the study:

1. The first objective of this study is to validate the Dutch-Flemish PROMIS pediatric proxy instruments for children aged 5-7 years and obtain reference data. This will be achieved by evaluating the Dutch-Flemish PROMIS instruments and PedsQL in a representative sample of the general Dutch population, consisting of parents of Dutch children aged 5-7 years.
2. The second objective is to investigate the psychometric properties of the Dutch-Flemish PROMIS instruments within the Dutch pediatric oncology population. This will be achieved by assessing the Dutch-Flemish PROMIS instruments and PedsQL in Dutch children diagnosed with cancer and their parents.
3. The third objective is to facilitate the implementation of validated Dutch-Flemish PROMIS instruments into clinical care, specifically within the KLIK-portal platform, for pediatric oncology in the Netherlands. This will be accomplished through conducting interviews and focus groups involving children diagnosed with cancer, their parents, and healthcare providers, where their experiences with the new PROMIS questionnaires will be discussed and analyzed.

Consequences for research and care:
The integration of patient-reported outcome measures (PROMs) into clinical practice enhances health-related quality of life (HRQoL) and potentially leads to improved survival rates. Furthermore, there is an expectation that PROMIS will emerge as the global standard for HRQoL assessment. Consequently, the integration of PROMIS into Dutch pediatric oncology research and healthcare is important for 1) strengthening the monitoring of HRQoL, and 2) contributing to a comprehensive international assessment of HRQoL.

Research team:

Anne Westerweel (PhD student), Prof. Dr. Martha Grootenhuis (Promotor), Prof. Dr. Caroline Terwee (Promotor), Dr. Kelly van Bindsbergen (Co-promotor) and Dr. Lotte Haverman (Co-promotor).