This study examines the role of access to care, patient/family interactions with the healthcare system, and stress in explaining variations in quality of end-of-life care. The data collected from this study may help researchers develop a model for identifying patients at risk of low-quality end-of-life care as well as recommendations for potential future interventions.
PRIMARY OBJECTIVE: I. Examine the role of access to care, patient/family healthcare interactions, and stress in variation in quality of end-of-life (EOL) care. OUTLINE: This is an observational study. PART 1: The medical records of deceased patients are reviewed on study. PART 2: Bereaved parents complete a survey and may participate in an interview on study.
Study Type
OBSERVATIONAL
Enrollment
2,425
Non-interventional study
Quality of end of life (EOL) care
Is a composite measure evaluated as the percent of applicable measures with high-quality care for each patient. For each child, will calculate the percent of measures applicable to that patient for which they met the criteria for high-quality care. Of note, not all measures will apply to every patient (e.g., assessment of sibling support will only apply to those with siblings). EOL quality will be treated as a continuous variable.
Time frame: 3 months to 2 years after the child's death
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Children's Hospital of Alabama
Birmingham, Alabama, United States
RECRUITINGArkansas Children's Hospital
Little Rock, Arkansas, United States
RECRUITINGKaiser Permanente-Oakland
Oakland, California, United States
RECRUITINGAlfred I duPont Hospital for Children
Wilmington, Delaware, United States
RECRUITINGGolisano Children's Hospital of Southwest Florida
Fort Myers, Florida, United States
RECRUITINGMemorial Regional Hospital/Joe DiMaggio Children's Hospital
Hollywood, Florida, United States
RECRUITINGNemours Children's Clinic-Jacksonville
Jacksonville, Florida, United States
RECRUITINGNemours Children's Hospital
Orlando, Florida, United States
RECRUITINGNemours Children's Clinic - Pensacola
Pensacola, Florida, United States
RECRUITINGChildren's Healthcare of Atlanta - Arthur M Blank Hospital
Atlanta, Georgia, United States
RECRUITING...and 18 more locations