Co-creating the EndoWatch - a smart wearable device for the management of hypothalamic dysfunction in pediatric brain tumor survivors: a pilot study
9 affiliations
- 1Department of Neuro-Oncology, Princess Máxima Center for Pediatric Oncology
- 2Department of Pediatric Endocrinology, University Medical Center Utrecht, Wilhelmina Children’s Hospital
- 3Corsano Health B.V.
- 4Department of Industrial Design, Eindhoven University of Technology
- 5De Nederlandse Hypofyse Stichting (Dutch Pituitary Foundation)
- 6Department of Endocrinology, Leiden University Medical Center
- 7EU Reference Network Rare Endocrine Conditions (Endo-ERN)
- 8Vereniging Kinderkanker Nederland (VKKN)
- 9Department of Clinical Physics, University Medical Center Utrecht
Abstract
Introduction: Hypothalamic dysfunction (HD) after treatment for a pediatric (supra)sellar tumor severely affects quality of life of patients, as well as their parents and families. Patients may develop signs of fatigue as a result of persistent disturbances in thermoregulation, sleep-wake rhythm, or hormonal insufficiencies. The management of HD requires around-the-clock care by the parent or caregiver. To support patients with HD and their parents/caregivers, we co-created a smart wearable device for continuous monitoring (EndoWatch) to detect early signs of hypothalamic dysregulation. We aimed to evaluate adherence to and user experiences of the first EndoWatch design.
Methods: In co-creation with clinicians, patient representatives, and design researchers and engineers, an existing smart device (wearable sensor and mobile application (app)) was adapted to a first design tailored for this purpose. In a prospective, observational study, 10 pediatric brain tumor survivors with HD (8 children; 2 adults) tested the first design of the device for 14 days. The primary outcome was adherence to wearing the EndoWatch. Secondary outcomes included usability, learnability, and desirability (through questionnaires), and barriers and facilitators (through semi-structured interviews).
Results: Ten patients participated (8 children, mean age 10.8 (SD 3.5); 2 adults, aged 18.9 and 31.0 years). Median overall adherence was 99.4% (IQR 22.8); two patients discontinued early due to wristband-related discomfort. Key facilitators were ease of use of the device and reliable technical performance. Main barriers included the absence of a separate caregiver app and limitations of the patient diary. These findings informed design modifications for future improvements of the device.
Discussion: The concept of the first EndoWatch design was considered acceptable and usable by patients with HD and their caregivers. This study identified key barriers and the modifications required for improvement, which were incorporated into a second EndoWatch design, to be evaluated in a larger prospective study.
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BibTeX
@article{hulsmann2026cocreating,
title = {{Co-creating the EndoWatch - a smart wearable device for the management of hypothalamic dysfunction in pediatric brain tumor survivors: a pilot study}},
author = {Sanne C. Hulsmann and Sarah B. Petras and Philippe Fraboulet and Yuan Lu and Johan P. de Graaf and Willemijn Plieger and Herke Jan Noordmans and Wim J.E. Tissing and Hanneke M. van Santen},
journal = {Frontiers in Endocrinology},
year = {2026},
month = oct,
doi = {10.3389/fendo.2026.1963615},
url = {https://www.frontiersin.org/articles/10.3389/fendo.2026.1963615/full},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Co-creating the EndoWatch - a smart wearable device for the management of hypothalamic dysfunction in pediatric brain tumor survivors: a pilot study
AU - Sanne C. Hulsmann
AU - Sarah B. Petras
AU - Philippe Fraboulet
AU - Yuan Lu
AU - Johan P. de Graaf
AU - Willemijn Plieger
AU - Herke Jan Noordmans
AU - Wim J.E. Tissing
AU - Hanneke M. van Santen
PY - 2026
DA - 2026/10/23
JO - Frontiers in Endocrinology
DO - 10.3389/fendo.2026.1963615
UR - https://www.frontiersin.org/articles/10.3389/fendo.2026.1963615/full
AB - Introduction: Hypothalamic dysfunction (HD) after treatment for a pediatric (supra)sellar tumor severely affects quality of life of patients, as well as their parents and families. Patients may develop signs of fatigue as a result of persistent disturbances in thermoregulation, sleep-wake rhythm, or hormonal insufficiencies. The management of HD requires around-the-clock care by the parent or caregiver. To support patients with HD and their parents/caregivers, we co-created a smart wearable device for continuous monitoring (EndoWatch) to detect early signs of hypothalamic dysregulation. We aimed to evaluate adherence to and user experiences of the first EndoWatch design. Methods: In co-creation with clinicians, patient representatives, and design researchers and engineers, an existing smart device (wearable sensor and mobile application (app)) was adapted to a first design tailored for this purpose. In a prospective, observational study, 10 pediatric brain tumor survivors with HD (8 children; 2 adults) tested the first design of the device for 14 days. The primary outcome was adherence to wearing the EndoWatch. Secondary outcomes included usability, learnability, and desirability (through questionnaires), and barriers and facilitators (through semi-structured interviews). Results: Ten patients participated (8 children, mean age 10.8 (SD 3.5); 2 adults, aged 18.9 and 31.0 years). Median overall adherence was 99.4% (IQR 22.8); two patients discontinued early due to wristband-related discomfort. Key facilitators were ease of use of the device and reliable technical performance. Main barriers included the absence of a separate caregiver app and limitations of the patient diary. These findings informed design modifications for future improvements of the device. Discussion: The concept of the first EndoWatch design was considered acceptable and usable by patients with HD and their caregivers. This study identified key barriers and the modifications required for improvement, which were incorporated into a second EndoWatch design, to be evaluated in a larger prospective study.
SN - 1664-2392
ER -