PowerMe: Empowering children with mitochondrial disease in dealing with fatigue

Mitochondrial disease is a rare, hereditary disease that can manifest in any age. In over 80% of the patients, the first symptoms start before the age of 18. The disease is very heterogeneous and can affect any tissue and organ. A common and burdensome complaint is fatigue. Therefore, we developed a blended therapy for children and adolescents, which combines face-to-face and online sessions, and a supportive treatment website containing information and assignments. The intervention consists of several cognitive behavioral therapy techniques targeting personally relevant goals related to fatigue. The efficacy of the treatment is evaluated in a multiple baseline single case experiment by the Radboud university medical centre in Nijmegen. Participants will fill out short, weekly questionnaires regarding their fatigue and school presence for 33 weeks. They will be randomly assigned a baseline period of 5-9 weeks before they can start with the PowerMe intervention. In addition questionnaires will be filled out pre- (T0) and post-intervention (T1) measuring fatigue, school presence, quality of life and physical functioning.

The PowerMe intervention is effective in reducing fatigue severity.

The PowerMe intervention improves physical functioning, quality of life and school presence.

Questionnaires measuring both primary and secondary outcomes will be filled out at the start of the study (T0) and after the treatment has ended (T1). Furthermore, the CIS subscale fatigue severity and several items regarding quality of life and school presence will be measured weekly for 33 weeks.

The intervention is a blended cognitive behavior therapy targeting fatigue in children and adolescents with mitochondrial disease and severe fatigue complaints. The blended character consists of both face-to-face sessions and online sessions using video calling with a trained psychologist. Furthermore, a website is used as a supportive tool during the treatment. It is a secure treatment environment that contains assignments, information, and an applications for emails and video calling. The intervention will be tailored to the patient, who will work on personal goals. The guideline for treatment length is 16 weeks, but can range from 12-20 weeks within the study. Also, a guideline exists for the amount and type of sessions: 3 sessions face-to-face and 5 sessions online. Again, these can be changed to match the patients needs.



The intervention consist of 7 modules. The patient will only do the modules and assignments relevant to reach his or her goals. Modules will focus on:
1) registration of activities, sleep and possible goals; 2) psycho-education; 3) cognitive techniques; 4) behavioral techniques related to energy management; 5) communication skills; 6) sleeping behavior and 7) relapse prevention. These CBT techniques can be useful in a wide range of possible treatment goals related to fatigue and having a mitochondrial disease.