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Research Studies

Our research is funded by:

and the Robert E. Leet and Clara Guthrie Patterson Trust

Active Studies

My Priorities in Caring for Children with Advanced Cancer [MyPAC]:

This study uses a MaxDiff survey method to narrow a list of measures that assess care quality. Further details can be found on MyPAC study website.

Implementing End-of-Life-Care Quality Measures in a Novel Pediatric Palliative Care (PPC) Database:

This is a retrospective cohort analysis characterizing quality of end-of-life care for a subset of children with cancer who received pediatric palliative care. We are analyzing data from the Shared Data and Research (SHARE) database, a novel multi-center pediatric palliative care dataset that links patient- and parent-reported outcomes with chart review and hospital utilization data.

A Natural Language Processing Study to Explore Attributes of End-of-Life Care:

In this study, we will characterize end-of-life care process measures for children who died of cancer, using rule-based natural language processing in electronic health records.

The Pediatric Advance Cancer Experience (PACE) Study:

Consistent with state-of-the-art instruments to measure quality of care in adults with serious illness, we will employ rigorous methods to develop the PACE questionnaire for parents of children with advanced cancer. The idea behind the PACE questionnaire is to help evaluate priority features of high quality end-of-life care, including care structure, processes, and experiences.

Planned Studies

Impact of the 21st Century Cures Act on Adolescent and Young Adult Cancer Care Experiences (I-CARE):

This is a qualitative study exploring adolescent and young adult patient perspectives on access to complete electronic health records as part of the Cures Act, implemented in 2021.

Completed Studies

A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children with Cancer:

No definitive measures exist to evaluate or improve the quality of end of life care for children with cancer, and adult quality measures may not apply. This completed study sought to explore end-of-life care priorities for children with cancer and their families and to determine if the existing quality measures for adults are relevant to children with cancer.

Refining Quality Measures for End-of-Life Care in Children with Cancer, using a Modified Delphi Method:

In a preliminary qualitative research study, we identified 26 measures of high quality end-of-life-care for children with advanced cancer. In a completed modified Delphi survey, we sought input from pediatric oncology professionals and parents to hone this list.