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Palliative Care of Children With End-Stage Heart Failure

This study has been terminated.
Information provided by:
Children's Healthcare of Atlanta Identifier:
First received: May 18, 2006
Last updated: May 2, 2007
Last verified: May 2007

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.

Congenital Disorders

Study Type: Observational
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

Resource links provided by NLM:

Further study details as provided by Children's Healthcare of Atlanta:

Study Start Date: January 1995
Estimated Study Completion Date: April 2006
Detailed Description:


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.


Ages Eligible for Study:   1 Year to 18 Years   (Child, Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No

Inclusion Criteria:

  • Any patient between 1 – 18 years of age (inclusive) Any patient with end stage heart disease Treated at Egleston Hospital, Children's Healthcare of Atlanta Followed by Sibley Heart Center Cardiology

Exclusion Criteria:

  • Those who do not meet inclusion criteria
  Contacts and Locations
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Please refer to this study by its identifier: NCT00327782

United States, Georgia
Children's Healthcare of Atlanta
Atlanta, Georgia, United States, 30322
Sponsors and Collaborators
Children's Healthcare of Atlanta
Principal Investigator: William T Mahle, MD Emory University SOM, Children's Healthcare of Atlanta
  More Information Identifier: NCT00327782     History of Changes
Other Study ID Numbers: 06-114
Study First Received: May 18, 2006
Last Updated: May 2, 2007

Keywords provided by Children's Healthcare of Atlanta:
palliative care
end stage heart failure

Additional relevant MeSH terms:
Heart Failure
Heart Diseases
Cardiovascular Diseases processed this record on May 25, 2017