Blended cognitive behaviour therapy for children and adolescents with mitochondrial disease targeting fatigue...

Area of Science:

• Pediatric Neurology
• Rare Diseases
• Psychological Interventions

Background:

• Mitochondrial disease presents with diverse symptoms, but fatigue is a significant burden for pediatric patients.
• Currently, no psychological interventions specifically target fatigue in children and adolescents with mitochondrial disease.
• The PowerMe intervention was developed as a blended cognitive behavior therapy (CBT) to address this gap.

Purpose of the Study:

• To evaluate the efficacy of the PowerMe intervention in reducing perceived fatigue in pediatric patients with mitochondrial disease.
• To assess the intervention's impact on fatigue-related cognitions and behaviors.
• To improve the overall quality of life for children and adolescents experiencing severe fatigue due to mitochondrial disease.

Main Methods:

• A multiple baseline single-case experimental design involving 10 participants (5 children, 5 adolescents) aged 8-18 with mitochondrial disease and severe fatigue.
• Participants undergo a 33-week study including weekly fatigue assessments and a randomized baseline period (5-9 weeks) before the intervention.
• The PowerMe intervention is a blended approach combining face-to-face and online therapy sessions with a dedicated website for information and assignments, tailored to individual needs and goals.

Main Results:

• The study aims to provide data on the effectiveness of the PowerMe intervention.
• Primary outcome is the reduction in perceived fatigue.
• Secondary outcomes include improvements in quality of life, school attendance, and physical functioning.

Conclusions:

• The PowerMe study will offer insights into the efficacy of a blended CBT approach for managing fatigue in pediatric mitochondrial disease.
• Results will inform the development of targeted psychological support for this population.
• The study design's strengths and limitations will be discussed.