Overview of study measures in study arms 1 and 2
Measures | Instruments | Baseline/pre | 4–6 months/post | 12 months |
Data source: children (≥11 years) | ||||
Quality of life | KINDL-R30–33 | X | X | X |
Emotional and behavioural symptoms | Strengths and Difficulties Questionnaire (SDQ)35 36 | X | X | X |
Coping | KIDCOPE45 46 | X | X | X |
Family functioning | FAD-GF49 50 | X | X | X |
Rehabilitation goals* | Self-developed items | X | ||
Patient/participant satisfaction* | Self-developed items | X | X | |
Data source: parent | ||||
Sociodemographic data | Self-developed items | X | ||
Medical data | Self-developed items (e.g, parental disease, parental healthcare use) | X | ||
Quality of life | Ulm Quality of Life Inventory for Parents34 | X | X | X |
Depression | Patient Health Questionnaire37 39 40 | X | X | X |
Anxiety | Generalised Anxiety Disorder Screener41 42 | X | X | X |
Fear of progression | FoP-Q-SF/PR43 | X | X | X |
Coping | Coping Health Inventory for Parents47 48 | X | X | X |
Family functioning | FAD-GF49 50 | X | X | X |
Parental burden related to the cancer illness | Self-developed items | X | X | X |
Rehabilitation goals* | Self-developed items | X | ||
Participant satisfaction* | Self-developed items | X | X | |
Reintegration | Self-developed items | X | X | |
About children (patient and max. two siblings) | ||||
Sociodemographic data | Self-developed items | X | ||
Medical data | Self-developed items (e.g, diagnosis, comorbidity, treatments received, use of healthcare services) | X | X | X |
Quality of life | KINDL-R30–33 | X | X | X |
Emotional and behavioural symptoms | SDQ35 36 | X | X | X |
Reintegration and healthcare use | Self-developed items | X | X | |
Medical assessment | ||||
Medical data (diagnosis, treatments and so on)† | Self-developed items | X | ||
Functional impairments‡ | Self-developed items | X | X | |
Rehabilitation goals‡ | Self-developed items | X | ||
Goal attainment ‡ | Self-developed items | X | ||
Treatments received during rehabilitation* | Rehabilitation discharge report | X | ||
Recommendations for aftercare * | Rehabilitation discharge report | X |
*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.