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Table 3 Time points of all questionnaires and other measurement instruments

From: Blended cognitive behaviour therapy for children and adolescents with mitochondrial disease targeting fatigue (PowerMe): study protocol for a multiple baseline single case experiment

  Measurements T0 T1 Weekly Intervention
Main outcome measures
 Fatigue severity CIS, subscale fatigue severity C C C  
PedsQL-MFS C, P C, P   
Secondary outcome measures
 Quality of life CHQ C, P C, P   
 School attendance School attendance questionnaire C, P C, P P  
 Physical functioning CHQ, subscale physical functioning C, P C, P   
PedsQL-MFS, subscale physical functioning C C   
 Impact on daily life Two weekly items (see the ‘Methods/design’ section)    C  
 Self-rated improvement Self-rated improvement questionnaire C C   
Indicators for treatment goals and therapeutic guidance
 Sleep problems Sleep diary     C
 Level of activity Activity diary     C
 Dysfunctional cognitions about the disease and fatigue ICQ C    
Self-efficacy Scale C    
 Mental fatigue CIS, subscale concentration C C   
 Parenting stress PIP P    
Other measures
 Demographic variables Age, gender, education, physical problems, and comorbidities P    
 Disease- and treatment related variables (medical record) Diagnosis, genetic mutation, affected family members, current/past treatments, time since diagnosis     
 Feasibility Questions regarding patient eligibility, response rate, willingness to participate, commitment and satisfaction with the intervention.   C, P, T   
 Evaluation/Feedback A process evaluation focused on treatment integrity, feedback of the therapist and patient on: the intervention, use of the website, and blended nature of the intervention   C, P, T   
  1. Note: T0, baseline assessment; T1, post-intervention assessment; weekly, weekly measurements throughout the entire study; C, child questionnaire; P, parent questionnaire; T, therapist questionnaire