Webinar regarding rheumatology and musculoskeletal diseases - fatigue

16.07.2024

The research environment in rheumatology and musculoskeletal diseases at Diakonhjemmet hospital has its own YouTube channel. There you can watch various webinars on topics related to this field. Here is a more detailed description of exhaustion in children and young people.

Although children and young people with these diseases are not treated by us, we invited Inger Helen Bolstad (occupational therapist) and Ulrika Nilsson (physiotherapist) from OUS/Rikshospitalet to talk about the work to develop a procedure-protocol for exhaustion in children and young people. You can watch the webinar here!

They have also shared a text with us about this work:

Anyone can feel tired and fatigued, but for some, that feeling doesn't go away despite getting enough sleep and rest. They feel exhausted all the time and may have difficulty functioning in everyday life. Despite ever-improving treatment of rheumatic disease in children and young people, fatigue is a common symptom. As a physio and occupational therapist at OUS, we regularly met these patients and we could not find good tools in our work.

By: Ulrika Nilsson (physiotherapist) and Inger Helen Bolstad (occupational therapist), OUS. Photo: Hellevik studio

Where should we start? How should we map and investigate this as best as possible? And could we actually do anything about it? These were questions we were often asked and which we thought other physio and occupational therapists had also asked. So we decided to create a knowledge-based subject procedure. The purpose was to create a "recipe" for how we should proceed when we met these patients. To achieve this, we gathered knowledge from research, colleagues and users.

Why does someone get fatigue?

We don't really know why some people get fatigued, but we do know something about factors that affect it. To understand this better, we use a model. It is divided into biological factors (the body and the disease), psychological factors (emotions and thoughts) and social factors (how the environment affects). For example, pain, stress, too little sleep and worries can cause more exhaustion.

Mapping and survey

Questions about fatigue should be included in the survey. It is important to find out if the child has fatigue and how it affects everyday life. Is it difficult to participate in recreational activities? What about school? To get an overview of this, a survey is made of the child's activities throughout the week. Here we try to find out if there are some days or activities that require a lot of energy and if you recognize any patterns that should be changed. It should also be investigated which factors affect the child's exhaustion, for example a lot of pain, little sleep and little physical activity. There are also some standardized measuring instruments that can be used.

Measures and treatment

There is limited research showing which treatment is effective in reducing fatigue, but some findings suggest that exercise can have a positive effect. Measures recommended in the procedure are mainly based on the experiences of therapists and patients. Patient education is important in order to increase understanding and awareness of one's own activity level and how various factors affect fatigue. An activity plan can be drawn up in collaboration with the child to achieve a suitable and consistent level of activity. This gives the child a more predictable everyday life with a balance between rest and activity. The plan is adjusted if necessary. There are also many other factors that can affect the exhaustion of the individual and measures should be aimed at these. Pain is a factor strongly associated with fatigue. It is therefore important that measures are aimed at treating pain. Some children are not physically active and should be motivated to movement. Facilitating participation in school and recreational interests is important for the patient to experience mastery. We have prepared an information film that can create an understanding of how everyday fatigue can be experienced. Talking to friends and others about your own exhaustion can be challenging, and the film can also be of help here. Children with pronounced exhaustion often need services from several people, and cooperation between these, for example school and healthcare, is necessary.

Cooperation for a better offer

The knowledge-based professional procedure has been prepared in collaboration with colleagues from all over Norway, both in hospitals and in municipal health services. We are in the process of using the procedure here at OUS. We look forward to gaining experience with how this works in practice and not least how the patients experience it. We hope that our work has increased the focus on fatigue in children and young people with rheumatic disease and contributes to a better physiotherapy and occupational therapy offer for this patient group.