Quality of Life in Pediatric Transplant Patients

Study Overview
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Brief Summary
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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.

Detailed Description
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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: Pediatric Quality of Life Inventory (PedsQL) PedsQL Family Impact Module PedsQL Family Information Form Functional Status II-R 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.

Official Title
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Quality of Life and Vulnerability in Pediatric Solid Organ Transplant Recipients

Conditions
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Kidney Transplantation, Liver Transplantation, Heart Transplantation

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Maximum Age: 21 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| QOL###<br>All child subjects in this cohort will be listed for or already have received a solid organ transplant (kidney, heart, or liver). | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Pediatric Quality of Life Inventory |  | every 6 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Peds QL Family Impact Module |  | every 6 months | 
| Peds QL Family Information Form |  | every 6 months | 
| Functional Status II-R |  | every 6 months | 
| Child Vulnerability Scale |  | every 6 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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solid organ transplant