Palliative Care of Children With End-Stage Heart Failure
Palliative care in pediatric oncology and neurology is well described in the literature. There is a lack of information on the care of children terminally ill due to heart failure. A significant number of children are diagnosed with terminal heart failure for which palliative care is required.
To describe palliative care of children over one year of age with end-stage heart failure, including need for and types of pain control, hospice use, need for and use of home nursing and quality of life issues.
|Study Design:||Observational Model: Defined Population
Observational Model: Natural History
Time Perspective: Longitudinal
Time Perspective: Retrospective
|Official Title:||Palliative Care of Children With End-Stage Heart Failure|
|Study Start Date:||January 1995|
|Estimated Study Completion Date:||April 2006|
Retrospective chart review of all children over one year of age diagnosed with end-stage heart failure between January 1, 1995 and December 31, 2005 at Children's Healthcare of Atlanta, Egleston Hospital, followed by Sibley Heart Center Cardiology.
Patient variables taken from the medical charts will include:
Diagnosis Age, gender Medications Prior surgery or transplantation Associated conditions such as muscular dystrophy, renal failure
Practice variables taken from the medical charts will include:
Hospice care provided Home inotropic infusions Medications administered for pain Social work/psychology evaluation DNR status
Number of patients receiving home nursing, involved in hospice, treated with pain medications, home oxygen or home inotropes.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00327782
|United States, Georgia|
|Children's Healthcare of Atlanta|
|Atlanta, Georgia, United States, 30322|
|Principal Investigator:||William T Mahle, MD||Emory University SOM, Children's Healthcare of Atlanta|