Strategies for Measuring Quality of Life among Pediatric Solid-Organ Transplant Recipients

Abstract

Objective Quality of life (QoL) has become a mainstay in the outcome assessment of pediatric solid-organ transplant recipients. Yet, how QoL is operationalized and measured varies drastically. It may be very difficult for clinicians and researchers to determine which methods of QoL assessment best meet the needs of their patients or study. The purpose of this literature review is to describe and evaluate the current status of QoL measurement in studies of pediatric solid-organ transplant recipients. Data Sources Searches of PubMed and PsycINFO from January 1985 to February 2012. Study Selection English peer-reviewed publications that described a method for measuring QoL whether it was a standardized questionnaire, qualitative approach, or another way of operationalizing the construct. Data Extraction QoL measurement strategies were extracted from 43 studies that met inclusion criteria. Data Synthesis Each article was reviewed and summarized by 2 study team members. Conclusions Many different strategies were used for measurement, and some were not consistent with established conceptualizations of QoL. Overall recommendations for best practices are offered. Detailed information about specific measures is included, and measures that seem to capture the construct well are recommended. Additionally, our review highlighted the importance of using a “battery approach,” including child and parent report as well as considering other variables, such as patient's age, when selecting a QoL measurement strategy.