Reducing patient burden in experience sampling studies: A simulation study to validate the personalized missingness design
Jongerling,Joran Schellekens,Melanie Bolsinova,Maria A. van der Lee,Marije Vogelsmeier,Leonie V. D. E.
Jongerling,Joran
Schellekens,Melanie
Bolsinova,Maria A.
van der Lee,Marije
Vogelsmeier,Leonie V. D. E.
Abstract
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 a day are ideally suited for this. However, collecting such data entails severe patient burden, especially for those with low energy and little concentration (e.g., patients suffering from Chronic Cancer-Related Fatigue and/or psychological disorders such as Somatic Symptom Disorder). This burden is currently predominantly lightened with single-item measures, but these cannot validly capture complex conditions, leading to a catch-22 situation: Capturing complex dynamic processes and effective personalized treatment require intensive longitudinal patient data on multiple-item questionnaires, but patients cannot provide this type of data because it is too taxing. To solve this problem, we developed a personalized missingness design that presents an individualized and time-varying minimal subset of items on each occasion, thereby striking an optimal balance between thoroughly mapping patients’ symptoms and keeping the number of items a person needs to answer to a minimum. The design builds on multilevel factor analyses to determine which sets of items are most informative, which can change over time. Expert-informed simulations validated our new design. While the design can be universally applied to any measurement of (psychological) symptoms (e.g., to inform cognitive behavioral therapy), we tailored our simulations to patients suffering from Chronic Cancer-Related Fatigue in collaboration with experts in Psycho-Oncology. In the near future, the design will be implemented in the widely used experience sampling app m-Path in collaboration with the developers
Description
Date
2025
Journal Title
Journal ISSN
Volume Title
Publisher
PsyArXiv Preprints
Research Projects
Organizational Units
Journal Issue
Keywords
Ecological Momentary Assessment, Chronic Cancer-Related Fatigue, Personalized Prevention and Care, Intensive Longitudinal Study Design, Patient Burden, SDG 3 - Good Health and Well-being
Citation
Jongerling, J, Schellekens, M, Bolsinova, M A, van der Lee, M & Vogelsmeier, L V D E 2025 'Reducing patient burden in experience sampling studies : A simulation study to validate the personalized missingness design' PsyArXiv Preprints. https://doi.org/10.31234/osf.io/9vde3_v2
License
info:eu-repo/semantics/restrictedAccess