Helping young people with chronic illness make decisions about their care
Adolescents’ involvement in decision making during specialty care visits for pediatric chronic illness: Development and evaluation of a new measure and implications for self-management
This project aims to create a new way to understand how young people, their parents, and doctors work together to make important health decisions during clinic visits for conditions like diabetes.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hosp of Philadelphia NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project ID | NIH-11089342 on NIH RePORTER |
What this research studies
When young people have a chronic illness, it's important for them to be involved in decisions about their health as they grow. This project will talk to young patients, their parents, and their doctors to understand how they currently make decisions together during clinic appointments. We want to create a new tool to better measure how much young people participate in these discussions. This tool will help us learn how different ways of making decisions affect a young person's ability to manage their condition and their overall health.
Who could benefit from this research
Good fit: Ideal candidates would be adolescents with chronic illnesses such as type 1 diabetes, sickle cell disease, juvenile idiopathic arthritis, or inflammatory bowel disease, along with their parents and healthcare providers.
Not a fit: Patients who are not adolescents or do not have one of the specified chronic illnesses may not directly benefit from this particular research.
Why it matters
Potential benefit: If successful, this work could lead to better ways for young people with chronic illnesses to participate in their own care decisions, potentially improving their health and self-management skills.
How similar studies have performed: While the importance of shared decision-making is recognized, there is a lack of specific, reliable tools to measure youth involvement in medical encounters, making this a novel approach.
Where this research is happening
Philadelphia, United States
- Children's Hosp of Philadelphia — Philadelphia, United States (Active)
Researchers
- Principal investigator: Miller, Victoria Allison — Children's Hosp of Philadelphia
- Study coordinator: Miller, Victoria Allison
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.