Table 1

Overview of study measures in study arms 1 and 2

MeasuresInstrumentsBaseline/pre4–6 months/post 12 months
Data source: children (≥11 years)
 Quality of lifeKINDL-R30–33 XXX
 Emotional and behavioural symptomsStrengths and Difficulties Questionnaire (SDQ)35 36 XXX
 CopingKIDCOPE45 46 XXX
 Family functioningFAD-GF49 50 XXX
 Rehabilitation goals*Self-developed itemsX
 Patient/participant satisfaction*Self-developed itemsXX
Data source: parent
 Sociodemographic dataSelf-developed itemsX
 Medical dataSelf-developed items (e.g, parental disease, parental healthcare use)X
 Quality of lifeUlm Quality of Life Inventory for Parents34 XXX
 DepressionPatient Health Questionnaire37 39 40 XXX
 AnxietyGeneralised Anxiety Disorder Screener41 42 XXX
 Fear of progressionFoP-Q-SF/PR43 XXX
 CopingCoping Health Inventory for Parents47 48 XXX
 Family functioningFAD-GF49 50 XXX
 Parental burden related to the cancer illnessSelf-developed itemsXXX
 Rehabilitation goals*Self-developed itemsX
 Participant satisfaction*Self-developed itemsXX
 ReintegrationSelf-developed itemsXX
About children (patient and max. two siblings)
 Sociodemographic dataSelf-developed itemsX
 Medical dataSelf-developed items (e.g, diagnosis, comorbidity, treatments received, use of healthcare services)XXX
 Quality of lifeKINDL-R30–33 XXX
 Emotional and behavioural symptomsSDQ35 36 XXX
 Reintegration and healthcare useSelf-developed itemsXX
Medical assessment
 Medical data (diagnosis, treatments and so on)†Self-developed itemsX
 Functional impairments‡Self-developed itemsXX
 Rehabilitation goals‡Self-developed itemsX
 Goal attainment ‡Self-developed itemsX
 Treatments received during rehabilitation*Rehabilitation discharge reportX
 Recommendations for aftercare *Rehabilitation discharge reportX
  • *Only in study arm 2.

  • †From study registries (study arm 1) or rehabilitation physician (study arm 2).

  • ‡Assessed by rehabilitation physician (study arm 2).

  • FAD-GF, Family Assessment Device (General Functioning Scale; FoP-Q-SF/PR, Fear of Progression Questionnaire.