Personalized Measurement and Care: Validating A Novel Patient-Friendly Experience Sampling Measurement Design [Seed Funding]
Successful personalized treatment requires a thorough understanding of the complex dynamic processes underlying disorders. Intensive longitudinal methods (e.g., experience sampling) that ask patients to complete multiple-item questionnaires several times per day are ideally suited for this.
However, collecting such data poses a severe burden for patients, especially those with low energy and little concentration, like cancer patients who suffer from Chronic Cancer-Related Fatigue. This burden can currently only be lightened with single-item measures. However, single-item measures cannot validly capture complex conditions. Clearly, we are in a catch-22 situation: To capture complex dynamic processes and provide effective personalized treatment, we need to collect intensive longitudinal data from patients on multiple-item questionnaires, but patients cannot repeatedly fill in the required questionnaires because it is too taxing.
This project will therefore develop a highly personalized measurement design that strikes an optimal balance between thoroughly mapping patients’ symptoms and keeping the number of items a person needs to answer to a minimum. This makes personalized care possible at a minimal patient burden. Specifically, we will conduct expert-informed simulation studies to validate our new design and determine its requirements (e.g., the minimum number of measurements). While the design can be universally applied, we will tailor our simulations to cancer patients in collaboration with experts from the Helen Dowling Institute. Once validated, our personalized missingness design will be implemented in the widely used experience sampling app m-Path. As such, it will be made available to anyone working with patients with limited capacity for (cognitive) load.
The Herbert Simon Research Institute for Health, Well-being, and Adaptiveness is a research center devoted to carrying out excellent, state of the art research in order to contribute to healthy and resilient people. We have selected three themes, which involve the collaboration between various Departments and address actual themes in need of both fundamental and applied research.