Long-term follow-up of childhood cancer survivors: clinical decision support and research participation

The aim of the research in this thesis was twofold. Part 1 aimed to provide insights into how the use of a (paper-based) clinical guideline for follow-up care of childhood cancer survivors could be improved (CCS) by communicating the guideline through a computerized clinical decision support system (CDSS). We first investigated factors that could facilitate a successful CDSS implementation through a systematic literature review. Subsequently, we investigated whether the use of an established method in cognitive psychology could guide the design of a prototype user-interface. Finally, we assessed whether the developed prototype better supported healthcare practitioners needs in defining screening recommendations for CCS than the paper-based guideline. With the prototype CDSS, healthcare practitioners needed less time and were more complete in defining recommendations. Building on these insights, we provide recommendations to enhance the acceptance of guideline-based CDSS.
Part 2 aimed to provide insights how to optimize participation rates of CCS in questionnaire studies. It is crucial that participation rates are high, ensuring a study population that is representative of the general CCS population. In a literature review, we assessed which study designs and CCS characteristics have been reported to influence participation rates. Within a Dutch nationwide questionnaire study on late effects, the impact of different invitation strategies on participation rates was assessed, as well as the differences between participants and eligible CCS, in order to determine generalizability of the study. We found that participation rates were higher in CCS who recently received follow-up care compared to CCS that didn’t.