Palliative Care of Children With End-Stage Heart Failure

Status Terminated

Clinical Trial Summary

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.

Clinical Trial 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. ;

Study Design

Observational Model: Defined Population, Time Perspective: Longitudinal

Related Conditions & MeSH terms

Clinical Trial Details

NCT number	NCT00327782
Study type	Observational
Source	Children's Healthcare of Atlanta
Contact
Status	Terminated
Phase	N/A
Start date	January 1995
Completion date	April 2006

View Details

See also
Status	Clinical Trial	Phase
Recruiting	`NCT04405700` - Measuring Adverse Pregnancy and Newborn Congenital Outcomes
Not yet recruiting	`NCT03291678` - Impact of Percutaneous Laparoscopic Assisted Internal Ring Ligation During Lap Orchiopexy	N/A
Completed	`NCT00489788` - Predictors for Pulmonary Valve Replacement - Anatomic and Hemodynamic Using MRI	N/A
Terminated	`NCT00268060` - Infant Medical Records: Case Report Proposal	N/A
Not yet recruiting	`NCT05955794` - Vocal Pattern Assessment as a New Key to Identifying Rare Syndromes	N/A
Completed	`NCT00257517` - Multisite Feeding Study: Home Surveillance and Feeding Strategies in Infants With Complex Single Ventricle	N/A
Completed	`NCT00478296` - Pulmonary Hypertension in Trisomy 21 Patients	N/A
Completed	`NCT04556487` - Turkish Affordances in the Home Environment for Motor Development-Infant Scale (AHEMD-IS)
Terminated	`NCT00261989` - Pulse Oximetry Readings and Hourly Variation in Oximetry Readings With CHD	N/A
Completed	`NCT00211081` - Spironolactone in Patients With Single Ventricle Heart	N/A
Terminated	`NCT00268099` - Optimal Timing for Repair of Right-to-Left Shunt Lesions	N/A
Active, not recruiting	`NCT05752019` - TAAI Erasmus Research Initiative to Fight CF: Monitoring Inflammation in CF Lung Disease Into a New Era
Completed	`NCT00490295` - Biomarkers for Detection of Brain Ischemia	N/A
Terminated	`NCT00327899` - Home Inotropic Therapy in Children	N/A
Terminated	`NCT00229905` - Child With Anomalous Drainage of IVC to Left Atrium	N/A
Completed	`NCT00277901` - MRI Assessment of RV Function: Patients With TOF or Aortic Coarctation	N/A
Terminated	`NCT00366314` - Frequency of Accessing Central Lines for Blood Samples	N/A
Terminated	`NCT00268034` - Left Ventricular Aneurysms in Children	N/A
Completed	`NCT00366847` - Computer Modeling of Congenital Heart Disease	N/A
Withdrawn	`NCT00460824` - A Retrospective Review - Anti-HLA Antibodies	N/A