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

NCT01389804 | Completed

• 1 other identifier: CHW10/115,GC 1127
• Study Type: observational
• Target: 51
• Locations: 1 country
• Sites: 5

Brief Summary

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.

Conditions

Transplant

Keywords

transplant, pediatric

Outcome Measures

Primary Outcomes (1)

• 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

  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.

  2 years

Secondary Outcomes (1)

• Post transplant outcomes

  2 years

Study Arms (1)

Pediatric Solid Organ Transplant

Parents of pediatric solid organ transplant recipients

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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

You may qualify if:

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

You may not qualify if:

• presence of significant communication or cognitive impairment on the part of the parent that would preclude completion of questionnaires based on self-report
• the child has already experienced the discharge to home transition after a previous transplant.

Sponsors & Collaborators

• Medical College of Wisconsin: lead
• Children's National Research Institute: collaborator

Study Sites (5)

Children's Memorial Hospital

Chicago, Illinois, 60614, United States

Location

St. Louis Children's Hospital

St Louis, Missouri, 63110, United States

Location

Children's Hospital and Medical Center of Nebraska

Omaha, Nebraska, 68114, United States

Location

Levine Children's Hospital

Charlotte, North Carolina, 28203, United States

Location

Children's Hospital of Wisconsin

Milwaukee, Wisconsin, 53146, United States

Location

Study Officials

• Stacee Lerret, PhD(c), RN

  Medical College of Wisconsin/Children's Hospital of Wisconsin

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Study Record Dates

• First Submitted: September 3, 2010
• First Posted: July 8, 2011
• Study Start: July 1, 2010
• Primary Completion: January 1, 2012
• Study Completion: January 1, 2012
• Last Updated: April 23, 2012

Record last verified: 2012-04

Locations

US (5)