Table 1 Measures and time points for patients and parents

Demographics

Standard inventory

x

x

Clinical data

CRF

x

x

x

Participation

CASP

x

x

x

Evaluation of the treatment

FBB

x

x

Self-concept

SDQ

x

x

x

Fatigue

EORTC QLQ-C30

x

x

x

Social Support

SSS

x

x

x

Illness perception

IPQ

x

x

x

Self-efficacy

SWE

x

x

x

Optimism

BFW

x

x

x

Autonomy

Kidscreen

x

x

x

Psychosocial problems/strengths

SDQ-D

x

x

x

Familial burden

FaBel

x

x

Family resources

FES

x

x

Psychosocial needs

SCNS-SF-34

x

x

Satisfaction with life

SWLS

x

x

x

Doctor-parent relationship

PRA-D

x

Quality of life

KINDL-R

x

x

x

SF-12

x

x

x

Sense of coherence

C-SOC

x

x

x

SOC-L9

x

x

x

Coping

CODI

x

x

x

CHIP-D

x

x

x

Mental health

ChilD-S

x

x

x

HADS

x

x

x