Methods
All childhood cancer care in the Netherlands is concentrated at the Princess Máxima Center for pediatric oncology. Care includes psychosocial monitoring and screening linked to outpatient cancer care appointments using the KLIK patient-reported outcome measure portal. At the time of study, over 2000 families of children with cancer in the Princess Máxima Center for pediatric oncology had active KLIK accounts.7 Patients and caregivers were asked for informed consent to use KLIK data for research.
Health-related quality of life (HRQoL) and fatigue of children with cancer were assessed every three months using the Dutch proxy- (2-7 year-olds) or self-report (8-18 year-olds) pediatric quality of life inventory (PedsQL) generic and multidimensional fatigue scales. Fatigue was only assessed for children who had completed active treatment. Higher scores (scale: 0-100) indicate higher HRQoL (e.g.: better emotional function) or less fatigue. Psychometric properties of the PedsQL generic and fatigue scales are good.8,9Cronbach’s alphas of scale scores in this study ranged from 0.73-0.94.
Caregivers self-reported their distress (thermometer score range 0-10, ≥4 indicates clinical distress) and problems regarding physical, emotional, social and practical issues every six months using the distress thermometer for parents (DT-P).10Psychometric properties of the DT-P are good.10,11Cronbach’s alphas of the total and subscale problem scores in this study ranged from 0.64-0.92.