Table 3 Outcome measures of the primary and secondary endpoints of the BOOST pACP program
Outcomes | Measurement instrument | No. of items | Unit of analysis | Timepoint | ||
|---|---|---|---|---|---|---|
T0 | T1 | T2 | ||||
Primary endpoint | ||||||
1. Quality of Parent-Adolescent Communication | Parent-Adolescent Communication Scale (PACS) [32] | 20 items | Adolescent | Â | x | Â |
Secondary endpoints | ||||||
2. Quality of Parent-Adolescent Communication | PACS | 20 items | Adolescent | x | Â | x |
3. Attitude on talking with the other (parent(s)/ their child) about what the adolescent finds important regarding his/her care and treatment | Created by the research teama | 8 items | Adolescent | x | x | x |
7 items | Parent(s) | x | x | x | ||
4. Self-efficacy towards talking with the other (parent(s)/ their child) about different ACP themes | Created by the research teama | 9 items | Adolescent | x | x | x |
4a. if the child initiates the conversation | Created by the research teama | 9 items | Parent(s) | x | x | x |
4b. to initiate the conversation his/herself | Created by the research teama | 9 items | Parent(s) | x | x | x |
5. Self-efficacy towards talking with their child and letting their child talk in different situations | Created by the research teama | 6 items | Parent(s) | x | x | x |
6. Behaviour: talking with the other (parent(s)/ their child) about different ACP themes | Created by the research teama | 9 items | Adolescent | x | x | x |
9 items | Parent(s) | x | x | x | ||
7. Intention to talk with the other (parent(s)/ their child) parent(s) about different ACP themes | Created by the research teama | 9 items | Adolescent | x | x | x |
9 items | Parent(s) | x | x | x | ||
8. Behaviour: talking with paediatric oncologist about different ACP themes | Created by the research teama | 9 items | Adolescent | x | x | x |
9. Intention to talk with paediatric oncologist about different ACP themes | Created by the research teama | 9 items | Adolescent | x | x | x |
10. Anxiety | PROMIS Anxiety 8a Short version [33]b | 8 items | Adolescent | x | x | x |
PROMIS 7a Short version [34]b | 7 items | Parent(s) | x | x | x | |
11. Level of shared decision making | 3 items | Parent(s) | x | x | x | |
12. Satisfaction items for the intervention group | Created by the research team | 14 items | Adolescent and parent(s) | Â | x | x |
13. Behaviour & intention to discuss ACP with the family | Created by the research team | 3 items | Oncologist | x | x | x |
14. Quality of Life | EQ-5D-Y [37] | 6 items | Adolescent | x | x | x |
Background characteristics | ||||||
15. Demographic and background information | Created by the research team | 3 items | Adolescent | x | Â | Â |
14 items | Parent(s) | x | Â | Â | ||
16. Disease & treatment information about adolescent | Created by the research team | 7–10 items | Oncologist | x | x | x |