Why Outcomes Matter

Clinical trials and care for children and youth often rely on outcomes that are selected by researchers or clinicians, yet these may not reflect what truly matters to young people themselves. This disconnect can lead to ineffective treatments, research waste, and missed opportunities to improve lives.

Our work addresses this gap by ensuring that outcomes are:

• Inclusive of the Voices of Youth and Caregivers: Youth and caregivers are often excluded from outcome selection. We want to ensure that the voices of youth and caregivers are included in the selection of outcomes in clinical trials and care.

• Relevant to Youth and Caregivers: The perspectives of youth and caregivers are different from those of clinicians and researchers - we don’t all speak with one voice. We want to ensure that the voices of youth and caregivers are heard and that the outcomes that matter most to them are included in clinical trials and care going forward.

• Consistent: Across trials, outcome selection is highly variable. For example, our scoping review of adolescent depression trials found 86 unique outcomes across 32 adolescent depression trials, with nearly half reported in only one study. Such a wide diversity of outcomes makes it difficult to compare results across trials or draw meaningful conclusions.

• Measurable: Across trials, measurement of outcomes is highly variable. We see too many different measurement tools used and often we are unsure of the validity, reliability, feasibility or other important aspects of the tool. We want to move towards better measurement of our outcomes.