Beyond the diagnosis: a PROactive approach to fatigue, daily life participation, and health-related quality of life in paediatric chronic disease

Abstract

More than one in five children with a chronic disease, such as cystic fibrosis, an autoimmune disease, or children after the treatment of childhood cancer, reports severe fatigue. This is four times as much as children in the Dutch population. Fatigue was not associated with the somatic diagnosis. Instead, fatigue was associated with biological factors (e.g. physical activity), psychological factors (e.g. depressive symptoms), social factors (e.g. social support), and parental factors (e.g. parental distress). We investigated the perspective of children and parents on the child’s daily life participation through in-depth interviews. From the child’s perspective, participation was considered more than merely engaging in activities; rather, they view having a sense of belonging, the ability to affect social interactions and the capacity to keep up with peers as key elements of full participation. Parents predominantly focused on securing their child’s well-being, using participation as a means to achieve well-being. The degree of friction between parents and children was based on the level of agreement on who takes the lead regarding the child’s participation. The dialogue regarding who takes decisions regarding the child’s participation, is important. To help the child take directorship over his/her fatigue and daily life participation, we investigated PROfeel; a combination of personalized assessment and feedback via an app. During six weeks, we daily assessed fatigue and associated symptoms via ecological momentary assessments in fatigued children. This led to a personalized report and tailored advice. PROfeel was feasible and useful and children were enthusiastic about the tool.