Overview of measures at the respective assessments
Variable/phenomena | Measure | Eligibility interview | Baseline | Postassessment | Weekly process evaluation | Six-month follow-up | Mode of administration |
Child age, gender, diagnosis, date of first diagnosis, date of end of treatment (where available) and type of treatment | The Swedish Childhood Cancer Registry | Swedish Childhood Cancer Registry (recruitment strategy A)/telephone (recruitment strategy B) | |||||
Inclusion and exclusion criteria; parent background data; date of end of treatment of child’s treatment and whether child has had any recurrence | Structured questions | ✓ | Telephone | ||||
Psychiatric (mood and anxiety) disorders, drug and alcohol misuse and suicidality | MINI | ✓ | ✓ | ✓ | Telephone | ||
Presenting psychological difficulties and related needs; expectations concerning the ENGAGE intervention; main distressing concerns regarding healthcare utilisation and productivity losses related to their child’s cancer | Semistructured questions | ✓ | Telephone | ||||
PTSS | PCL-5 | ✓ | ✓ | ✓ | ✓ | Portal/telephone Only Portal during intervention | |
PTSS | PCL-C | ✓ | ✓ | ✓ | ✓ | Portal/telephone Only Portal during intervention | |
Depression | PHQ-9 | ✓ | ✓ | ✓ | ✓ | Portal/telephone Only Portal during intervention | |
Anxiety | GAD-7 | ✓ | ✓ | ✓ | Portal/telephone | ||
Fear of recurrence | Structured question | ✓ | ✓ | ✓ | Portal/telephone | ||
Fear of serious health condition | Structured question | ✓ | ✓ | ✓ | Portal/telephone | ||
Psychological inflexibility and experiential avoidance | AAQ-6 | ✓ | ✓ | ✓ | ✓ | Portal/telephone Only Portal during intervention | |
Depressed inactivity | BADS | ✓ | ✓ | ✓ | ✓ | Portal/telephone Only Portal during intervention | |
Fatigue | FSS | ✓ | ✓ | ✓ | Portal/telephone | ||
Quality of life | EQ-5D | ✓ | ✓ | ✓ | Portal/telephone | ||
Self-compassion | SCS-SF | ✓ | ✓ | ✓ | Portal/telephone | ||
Health economics | TiC-P | ✓ | ✓ | Portal/telephone | |||
Acceptability of the intervention; e-therapist; and study procedures; views concerning the impact of the ENGAGE intervention. Non-attendees and poor attendees are asked about reasons for disengaging, barriers to treatment and suggestions for future intervention development and study procedures. | Semistructured questions | ✓ | Telephone |
AAQ-6, Acceptance and Action Questionnaire; BADS, Behavioural Activation for Depression Scale; EQ-5D, EuroQol 5-dimension questionnaire; FSS, Fatigue Severity Scale; GAD-7, Generalized Anxiety Disorder 7-item scale; MINI, Mini-International Neuropsychiatric Interview; PCL-5, Post-traumatic Stress Disorder Checklist for DSM-5; PCL-C, Post-traumatic Stress Disorder Checklist-Civilian version; PHQ-9, Patient Health Questionnaire; PTSS, symptoms of post-traumatic stress; SCS-SF, Self-Compassion Scale-Short Form; TiC-P, Trimbos and Institute of Medical Technology Assessment Cost Questionnaire for Psychiatry.