Table 1 Measurement instruments
Variables | Measurement |
|---|---|
Self-report, AYA | |
Currently most stressful event with regard to their CD | Brief description, free text |
Symptoms of posttraumatic stress disorder | The Child and Adolescent Trauma Screen (CATS) 7–17, Symptom Scale [37] |
Depressive and anxiety symptom severity | Patient Health Questionnaire Anxiety and Depression Scale (PHQ-9 and GAD-7, combined PHQ-ADS) [38] |
Current overall health | EuroQol visual analogue scale (EQ VAS) from EuroQol Five-Dimensional Questionnaire - Youth (EQ-5D-Y) [39, 40] |
Coping | Coping with a Disease (CODI) [41] |
Personal growth | Short version of the Stress-Related Growth Scale (SRGS) adapted to AYA with chronic conditions [42, 43] |
Social Support | Sub-scale “Actually received support, recipient” of the Berlin Social Support Scale (BSSS) [44] |
Observer report, reference person | |
Currently most stressful event with regard to the AYA´s CD | Brief description, free text |
Symptoms of posttraumatic stress disorder | Child and Adolescents Trauma Screen-Caregiver (CATS-C-D) [37] |
Symptoms of anxiety | Screen for Child Anxiety Related Emotional Disorders (SCARED) [45] |
Symptoms of depression | Mood and Feelings Questionnaire (SMFQ-P) [46] |
Social Support | Subscale “Actually received support, provider” of the Berlin Social Support Scale (BSSS) [44] |