Primary outcome measures | Measurements | Informant |
---|---|---|
Psychosocial functioning | Child Behaviour Checklist (CBCL) [22] | parent |
 | Youth Self-Report (YSR) [23] | child (age11-18) |
 | Strengths and Difficulties Questionnaire/4-18 (SDQ parent and child report) [24, 25] | parent & child (11-18) |
Disease related coping skills | Questionnaire Op Koers for children (QOK-c, 18-items) [1] | child (8-18) |
 | Questionnaire Op Koers for parents (QOK-p, 18-items) [1] | parent |
Secondary outcome measures | Measurements | Informant |
Quality of life | KIDSCREEN-27 [26] | child (8-18) |
 | DISABKIDS Chronic Generic Measure - short form (DCGM-12) [27, 28] | child (8-18) |
General coping skills | Adapted version of the Coping Strategies Inventory (CSI) [21] | child (8-18) |
Self perception | Self-perception Self-Perception Profile for Children (CBSK) [29] | child (8-12) |
 | Self-Perception Profile for Adolescents (CBSA) [30] | child (12-18) |
Parental stress | Nijmegen Parenting Stress Index-Short (NPSIS) [31] | parent |
Parent - child interaction | Family Interaction Task (FIT) is a 30-minute semi-structured observation¹ [34] | observation |
 | Security Scale [32] | child (8-18) |
Perceived vulnerability | Dutch version of the Parental Vulnerability Scale (8 items) [33] | parent |