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Parents of Pediatric Solid Organ Transplant Recipients: Transition to Home and Chronic Illness Care

This study has been completed.
Sponsor:
Collaborator:
Children's Research Institute
Information provided by (Responsible Party):
Stacee Lerret, Medical College of Wisconsin
ClinicalTrials.gov Identifier:
NCT01389804
First received: September 3, 2010
Last updated: April 19, 2012
Last verified: April 2012

September 3, 2010
April 19, 2012
July 2010
January 2012   (final data collection date for primary outcome measure)
Determine if discharge preparation has an effect on parent readiness for hospital discharge and if readiness for hospital discharge effects post-discharge outcomes following hospital discharge in parents of solid organ transplant recipients [ Time Frame: 2 years ] [ Designated as safety issue: No ]

Determine if discharge preparation (discharge teaching and care coordination) for parents of solid organ transplant children has an effect on:

(1) short term discharge transition outcomes and transition to home-based care (measured at 3 weeks post-discharge) and,(2) longer term chronic care outcomes at 3 and 6 months post-discharge.

Same as current
Complete list of historical versions of study NCT01389804 on ClinicalTrials.gov Archive Site
Post transplant outcomes [ Time Frame: 2 years ] [ Designated as safety issue: No ]
Determine outcomes (parent coping, adherence, family management, and utilization of healthcare services) and the relationship between these outcomes, throughout the transition to chronic care management for families of solid organ transplant recipients at 3 weeks, 3 months and 6 months post-discharge.
Same as current
Not Provided
Not Provided
 
Parents of Pediatric Solid Organ Transplant Recipients: Transition to Home and Chronic Illness Care
Parents of Pediatric Solid Organ Transplant Recipients: Transition to Home and Chronic Illness Care

The overall long term objective of this research is to improve health care utilization and quality of life of pediatric solid organ transplant recipients and family. Understanding the process of transition to a chronic medical condition during the acute (3 weeks after transplant) and long term (3 and 6 months) will significantly guide the development of clinical interventions aimed at maximizing adherence and family psychosocial adjustment.

Parents of children that have received a heart, kidney, liver or lung transplant will be invited to participate in this protocol.

Involvement in this study entails completion of questionnaires at 4 separate time points. Parents will first complete questionnaires regarding discharge teaching, care coordination and readiness for hospital discharge on the day of discharge from the hospital. Parents will subsequently complete questionnaires at 3 weeks, 3 months and 6 months after discharge. The post discharge questionnaires assess coping, family management, adherence and utilization of healthcare resources.

Currently, no research has been conducted related to readiness for hospital discharge of a parent as the primary caregiver for a child with solid organ transplant or the sequential relationships between hospitalization care and the trajectory of post-discharge outcomes. This research will fill the gap in knowledge needed for care of solid organ transplant children and parents.

The ability to identify factors in the first year after transplant that are predictive of decreased coping and non-adherence affords an opportunity to develop nursing and health interventions that have significant implications for care decisions, as well as disease activity and health care costs.

Observational
Observational Model: Cohort
Time Perspective: Prospective
Not Provided
Not Provided
Non-Probability Sample

Parents of pediatric solid organ transplant recipients (heart, kidney, liver or lung)

Transplant
Not Provided
Pediatric Solid Organ Transplant
Parents of pediatric solid organ transplant recipients
Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Completed
51
January 2012
January 2012   (final data collection date for primary outcome measure)

Inclusion Criteria:

  1. the parent's child has undergone a heart, kidney, liver, lung or multivisceral transplant and is being discharged home from the hospital
  2. the parent is English speaking (tools being used have been validated for English participants only)
  3. the parent is 18 years of age or older

Exclusion Criteria:

  1. presence of significant communication or cognitive impairment on the part of the parent that would preclude completion of questionnaires based on self-report
  2. the child has already experienced the discharge to home transition after a previous transplant.
Both
18 Years and older
No
Contact information is only displayed when the study is recruiting subjects
United States
 
NCT01389804
CHW10/115,GC 1127
No
Stacee Lerret, Medical College of Wisconsin
Medical College of Wisconsin
Children's Research Institute
Principal Investigator: Stacee Lerret, PhD(c), RN Medical College of Wisconsin/Children's Hospital of Wisconsin
Medical College of Wisconsin
April 2012

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP