Improving end-of-life care for children with cancer

The Pediatric Advanced Cancer Experience (PACE): Measuring Quality of End-of-Life Care for Children with Cancer

NIH-funded research Yale University · NIH-11045093

This study is all about making end-of-life care better for kids with advanced cancer by listening to what families need and want, and it will create a new questionnaire to help improve the care they receive.

Quick facts

Grant typeCareer grant
Study typeNIH-funded research
Funding institutionYale University NIH-funded
Lab location1 site (New Haven, United States)
Project IDNIH-11045093 on NIH RePORTER

What this research studies

This research focuses on enhancing the quality of end-of-life care for children suffering from advanced cancer. It aims to identify and prioritize quality measures that reflect the needs and perspectives of families, particularly parents of affected children. The study will utilize advanced techniques, including natural language processing of electronic health records, to analyze existing care processes and develop a new questionnaire called the Pediatric Advanced Cancer Experience (PACE) to evaluate care quality. By addressing the gaps in current standards, this research seeks to improve palliative care delivery for children facing terminal cancer.

Who could benefit from this research

Good fit: Ideal candidates for this research include families of children diagnosed with advanced cancer who are facing end-of-life decisions.

Not a fit: Patients who are not facing advanced cancer or those who are in remission may not receive benefit from this research.

Why it matters

Potential benefit: If successful, this research could lead to improved end-of-life care experiences for children with cancer and their families.

How similar studies have performed: While there has been significant research on end-of-life care for adults, this approach focusing specifically on children with cancer is relatively novel and untested.

Where this research is happening

New Haven, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions Advanced Cancer
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.