Palliative Care of Children With End-Stage Heart Failure

This study has been terminated.
Sponsor:
Information provided by:
Children's Healthcare of Atlanta
ClinicalTrials.gov Identifier:
NCT00327782
First received: May 18, 2006
Last updated: May 2, 2007
Last verified: May 2007
  Purpose

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.

Objective:

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.


Condition
Congenital Disorders

Study Type: Observational
Study Design: Observational Model: Defined Population
Time Perspective: Longitudinal
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:

Methods:

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

Statistics:

Number of patients receiving home nursing, involved in hospice, treated with pain medications, home oxygen or home inotropes.

  Eligibility

Ages Eligible for Study:   1 Year to 18 Years
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Criteria

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
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00327782

Locations
United States, Georgia
Children's Healthcare of Atlanta
Atlanta, Georgia, United States, 30322
Sponsors and Collaborators
Children's Healthcare of Atlanta
Investigators
Principal Investigator: William T Mahle, MD Emory University SOM, Children's Healthcare of Atlanta
  More Information

No publications provided

ClinicalTrials.gov Identifier: NCT00327782     History of Changes
Other Study ID Numbers: 06-114
Study First Received: May 18, 2006
Last Updated: May 2, 2007
Health Authority: United States: Food and Drug Administration

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

Additional relevant MeSH terms:
Heart Failure
Heart Diseases
Cardiovascular Diseases

ClinicalTrials.gov processed this record on July 26, 2014