Methods
In the Princess Máxima Center, approximately 60% of families of
children in outpatient cancer care participate in regular psychosocial
monitoring and screening with the KLIK patient-reported outcome measure
portal.7, 8 Assessment takes place every three to six
months, combined with their outpatient appointments, and families are
asked to provide informed consent to use their clinical data for
research. This study used assessments between 01-01-2020 and 01-06-2020
and considered March 13 as the start of the COVID-19 era with national
preventative measures, including social distancing and advice to stay at
home. Personal and medical characteristics of children (sex, age,
diagnosis group [solid tumor, CNS tumor or hematological cancer],
time since diagnosis and treatment status [currently in or after
treatment]) were extracted from medical records.
Outcomes
Health-related quality of life (HRQoL) and fatigue of children with
cancer were assessed using the age-appropriate Dutch proxy- (age: 2-7
years old) or self-report (age: 8-18 years old) pediatric quality of
life inventory (PedsQL) generic and multidimensional fatigue scales.
Higher scores (scale: 0-100) indicate higher HRQoL or better functioning
(e.g.: better emotional function or less fatigue). The PedsQL generic
and fatigue scales have good psychometric properties.9,
10 Cronbach’s alphas in this study ranged from 0.74-0.94.
Using the distress thermometer for parents (DT-P), caregivers
self-reported their overall distress regarding physical, emotional,
social and practical issues on a 0-10 scaled thermometer, scores of 4 or
higher indicating clinical distress.11 In addition,
experienced problems were assessed for 6 domains and summed to 2 total
problem scores. Psychometric properties of the DT-P score are
good.11, 12 Cronbach’s alphas in this study ranged
from 0.65-0.91.
Statistical analyses
Participant characteristics and outcomes were described for the
pre-COVID-19 and COVID-19 era. Pre-COVID-19 and COVID-19 era scores were
compared using mixed effect linear regression analyses, to correct for
repeated measurements in a minority of participants and both caregivers
of a child filling out the DT-P. The occurrence of clinical distress was
analyzed using a logistic generalized estimating equation model with
exchangeable structure. To adjust for multiple testing, the level of
statistical significance was set at .05 divided by the number of
analyses conducted on (sub)scales of a questionnaire (e.g. for PedsQL
generic: 0.05/6=0.008). Models were corrected for the personal and
medical characteristics and effect modification of treatment status was
evaluated.