Who can enter
- Children and/or adults with hypothalamic dysfunction after treatment for a brain tumor during childhood.
- Age between 6 – 40 years
Goal
The goal of this study is to determine whether the smart wristband (the EndoWatch) and the accompanying app can support patients and parents in the daily management of hypothalamic dysfunction. To investigate this, we ask the participant to wear the smart wristband for 6 months.
Background
The hypothalamus is an area in the brain that regulates the ‘total balance’ of the body, like a captain on a ship. It regulates the body temperature, the biological clock (sleep), feelings of hunger and thirst, energy metabolism, behavior and the production of various hormones in the body. If the hypothalamus does not fully function anymore, because it is damaged, one or more of these tasks cannot be executed. We call this hypothalamic dysfunction. The body is ‘out of balance’. This can cause many symptoms and a poor quality of life.
A smart wristband that can continuously measure the body temperature, stress, sleep and daily activity in patients with hypothalamic dysfunction could relieve the care of parents and/or other caregivers, who currently provide 24/7 care. We refer to this wristband as the EndoWatch. Imbalances can be measured and detected, and parents and/or caregivers can act on it sooner.
From a previous study, we know that wearing this wristband is feasible for children and adults with hypothalamic dysfunction, and that the wristband and the app are easy to use.
The aim of this study is to investigate whether the smart wristband and its accompanying app support patients with hypothalamic dysfunction and their parents in managing the condition in daily life. We investigate if and how the smart wristband can support the patients and parents, and what improvements are still needed. The results of this study will be used in follow-up research necessary for the further development of this smart wristband and the app.