Quality of Life in Pediatric Transplant Patients

Medical College of Wisconsin

Status: Terminated

Conditions: Liver Transplantation; Kidney Transplantation; Heart Transplantation

Study type: Observational

Funder types: Other

Identifiers

NCT00678002

GC173

CHW 08/157

Details and patient eligibility

About

The goal of this study is to compare parent and child perceptions of wellness and vulnerability in children who have undergone solid organ transplant. It is hypothesized that there will be significant differences between parent and child perceptions.

Full description

There are numerous studies that report on the quality of life in solid organ transplant recipients. However, very few studies target quality of life parameters for these children and their families across all solid organ transplantation. Furthermore, no literature directly addresses a comparison of perceptions and wellness, impact on family, and vulnerability in a comparative format by these distinct, but definitely related populations.

The goal of this study is to compare parent and child perceptions of wellness and vulnerability in children who have undergone solid organ transplant. It is hypothesized that there will be significant differences between parent and child perceptions. Outcomes will be measured by using five different instruments:

1. Pediatric Quality of Life Inventory (PedsQL)
2. PedsQL Family Impact Module
3. PedsQL Family Information Form
4. Functional Status II-R
5. Child Vulnerability Scale (CVS)

Patients will be enrolled at the time of transplant listing, or after transplant. Patients and families will complete the survey once every 6 months while the patient is active on the respective transplant waiting list. After transplant, the patients and families will be asked to complete the survey once every 6 months for the first two years and annually thereafter.

This study may provide us with an improved understanding of parent and child perceptions in wellness, impact on family, and vulnerability within each transplant group. The results may also indicate trend differences between these three populations. These differences may help to provide insight into family perspectives allowing for greater anticipatory guidance and targeted interventions.

Enrollment: 57 patients

Sex: All

Ages: Under 21 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• between newborn and 21 years old
• parent/child pairs of patients listed for or who have received a liver transplant, kidney transplant, or heart transplant

Exclusion criteria

• unwilling or unable to participate
• not in one of the above transplant groups
• non-English speaking

Trial design

57 participants in 1 patient group

QOL###

Description:

All child subjects in this cohort will be listed for or already have received a solid organ transplant (kidney, heart, or liver).