I L Klein1, K F E van de Loo2, T J Hoogeboom3, M C H Janssen4, J A M Smeitink5, E van der Veer6, C M Verhaak2, J A E Custers2. 1. Radboud university medical center, Radboud Institute for Health Sciences, Radboud Center for Mitochondrial Medicine, Department of Medical Psychology, PO Box 9101, Geert Grooteplein Zuid 10, 6500 HB, Nijmegen, The Netherlands. Inge-Lot.Klein@radboudumc.nl. 2. Radboud university medical center, Radboud Institute for Health Sciences, Radboud Center for Mitochondrial Medicine, Department of Medical Psychology, PO Box 9101, Geert Grooteplein Zuid 10, 6500 HB, Nijmegen, The Netherlands. 3. Radboud university medical center, Radboud Institute for Health Sciences, IQ Healthcare, PO Box 9101, Geert Grooteplein Zuid 10, 6500 HB, Nijmegen, The Netherlands. 4. Radboud university medical center, Radboud Institute for Molecular Life Sciences, Radboud Center for Mitochondrial Medicine, Department of Internal Medicine, PO Box 9101, Geert Grooteplein Zuid 10, 6500 HB, Nijmegen, The Netherlands. 5. Radboud university medical center, Radboud Institute for Molecular Life Sciences, Radboud Center for Mitochondrial Medicine, Department of Pediatrics, PO Box 9101, Geert Grooteplein Zuid 10, 6500 HB, Nijmegen, The Netherlands. 6. International Mito Patients Association, Bergambacht, The Netherlands.
Abstract
BACKGROUND: Mitochondrial disease is a rare, hereditary disease with a heterogeneous clinical presentation. However, fatigue is a common and burdensome complaint in children and adolescents with mitochondrial disease. No psychological intervention targeting fatigue exists for paediatric patients with a mitochondrial disease. We designed the PowerMe intervention, a blended cognitive behaviour therapy targeting fatigue in children and adolescents with mitochondrial disease. The aim of the intervention is to reduce perceived fatigue by targeting fatigue-related cognitions and behaviours. METHODS: A multiple baseline single case experiment will be conducted in five children (8-12 years old) and 5 adolescents (12-18 years old) with mitochondrial disease and severe fatigue. Patients will be included in the study for 33 weeks, answering weekly questions about the fatigue. Patients will be randomly assigned a baseline period of 5 to 9 weeks before starting the PowerMe intervention. The intervention consists of face-to-face and online sessions with a therapist and a website with information and assignments. The treatment will be tailored to the individual. Each patient will work on their personalized treatment plan focusing on personally relevant goals. The primary outcome is perceived fatigue. Secondary outcomes are quality of life, school presence and physical functioning. DISCUSSION: The results of the PowerMe study will provide information on the efficacy of a blended cognitive behaviour therapy on reducing perceived fatigue and its impact on daily life in children and adolescents with mitochondrial disease. Strengths and limitations of the study design are discussed. TRIAL REGISTRATION: Dutch Trial Register NTR 7675. Registered on 17 December 2018. Identifier https://www.trialregister.nl/trial/7433.
BACKGROUND: Mitochondrial disease is a rare, hereditary disease with a heterogeneous clinical presentation. However, fatigue is a common and burdensome complaint in children and adolescents with mitochondrial disease. No psychological intervention targeting fatigue exists for paediatric patients with a mitochondrial disease. We designed the PowerMe intervention, a blended cognitive behaviour therapy targeting fatigue in children and adolescents with mitochondrial disease. The aim of the intervention is to reduce perceived fatigue by targeting fatigue-related cognitions and behaviours. METHODS: A multiple baseline single case experiment will be conducted in five children (8-12 years old) and 5 adolescents (12-18 years old) with mitochondrial disease and severe fatigue. Patients will be included in the study for 33 weeks, answering weekly questions about the fatigue. Patients will be randomly assigned a baseline period of 5 to 9 weeks before starting the PowerMe intervention. The intervention consists of face-to-face and online sessions with a therapist and a website with information and assignments. The treatment will be tailored to the individual. Each patient will work on their personalized treatment plan focusing on personally relevant goals. The primary outcome is perceived fatigue. Secondary outcomes are quality of life, school presence and physical functioning. DISCUSSION: The results of the PowerMe study will provide information on the efficacy of a blended cognitive behaviour therapy on reducing perceived fatigue and its impact on daily life in children and adolescents with mitochondrial disease. Strengths and limitations of the study design are discussed. TRIAL REGISTRATION: Dutch Trial Register NTR 7675. Registered on 17 December 2018. Identifier https://www.trialregister.nl/trial/7433.
Entities:
Keywords:
Blended cognitive behaviour therapy; Children and adolescents; Fatigue; Mitochondrial disease; Single case experiment
Authors: Juliane Menting; Cees J Tack; Gijs Bleijenberg; Rogier Donders; Hal A Droogleever Fortuyn; Jaap Fransen; Martine M Goedendorp; Joke S Kalkman; Riet Strik-Albers; Nens van Alfen; Sieberen P van der Werf; Nicol C Voermans; Baziel G van Engelen; Hans Knoop Journal: Health Psychol Date: 2018-06 Impact factor: 4.267
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