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The child is more important than the diagnosis

The child is more important than the diagnosis

In the Netherlands, more than one in five children with a chronic disease is severely fatigued. Merel Nap-van der Vlist, of the UMC Utrecht, studied fatigue and daily life participation in chronically ill children. She concluded that each child is unique and has its own personal factors that play a role in fatigue and how someone participates. Not the disease is the determining factor, but the unique personal factors. Therefore, it is important to assess children with a chronic disease and their parents and discuss the results. Merel defended her thesis on September 14, 2021.

Twenty-one percent of children with a chronic disease (2 – 18 years old), such as cystic fibrosis, juvenile rheumatoid arthritis or children after cancer treatment, report being severely fatigued. That's four times more than children without a chronic disease. "Fatigue affects quality of life and participation in daily life," tells Merel Nap-van der Vlist. "In my PhD research I investigated fatigue and daily life participation in chronically ill children through a cohort study, in-depth interviews with children and parents, and via an eHealth study for teenagers, using the newly developed PROfeel tool."

Look at the child
Research shows that the somatic diagnosis and disease-related factors are not the most important determinants of fatigue. Merel: "Fatigue is related to several transdiagnostic, and possibly modifiable factors. Examples of these are biological or lifestyle factors, such as physical activity or sleep-wake rhythm, psychological factors, such as depressive symptoms or anxiety, social factors, such as support from friends or family, and parental factors, such as parental distress. Therefore, it is important to look beyond which disease a child has, but to take the lifestyle, psychological, and social domain into account. A treatment for fatigue may focus on these modifiable transdiagnostic factors."

App for personal measurement
During her research, Merel and a team of researchers developed the PROfeel eHealth tool. "With this app, fatigued adolescents scored their fatigue and associated factors via notificiations on their smartphone," Merel says. "This gave us insight into the course of the symptoms over the day and associated factors. The adolescents then received a personal report and tailored advice. They were enthusiastic about the tool, because it helped them to deal with their fatigue themselves. The adolescent gains more control over his or her fatigue."

Personalized tool for other illnesses
The study shows that many transdiagnostic factors were found that influence fatigue. "The PROfeel eHealth tool may be used with any disease. Because of this, these results could potentially be used for other children and adolescents who suffer from fatigue, for example due to long COVID or due to other diseases," concludes Merel. 

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