Table 2 Outcome measures

Primary outcome

Health-related quality of life score: PedsQL self-questionnaire (version 13–18 years for adolescents and version 18–25 years for young adults)

Secondary outcomes

Proxy version of the PedsQL for parents of adolescents (13–18 years old)

Level of anxiety (STAI self-questionnaire for young adults and the STAI-Children self-questionnaire for adolescents)

Level of depression (BDI self-questionnaire for young adults and CDI self-questionnaire for adolescents)

Level of physical activities (RICCI and GAGNON self-questionnaire)

Cardiopulmonary exercise tests parameters (peak VO2, VAT, VE/VCO2 slope)

Clinical outcomes: NYHA functional class, blood pressure, healthcare usage (primary and secondary care contacts, hospitalisation), and medication

The socio-economic status of the patient and/or the family (only at baseline)

Acceptability of the intervention to participants

Qualitative analysis (sample of patients from the intervention group)