Assessment of health-related quality of life in pediatric hematopoietic stem cell transplant recipients: progress, challenges and future directions. (April 2013)

• Record Type: Journal Article
• Authors: Parsons, Susan K; Tighiouart, Hocine; Terrin, Norma
• Is Part Of: Expert review of pharmacoeconomics & outcomes research. Volume 13:Number 2(2013)
• Page Start: 217
• Page End: 225
• Publication Date: 2013-04
• Subjects: Child Health Ratings Inventories -- health-related quality of life -- hematopoietic stem cell transplant -- parent–child difference -- Patient-Reported Outcomes Measurement Information SystemTM; Pharmacology -- Economic aspects -- Periodicals; 338.47615105
• DOI: 10.1586/erp.13.11
• Languages: English
• ISSNs: 1473-7167

Abstract

This article provides an overview of health-related quality of life (HRQoL) assessments in pediatric hematopoietic stem cell transplants, focusing on the relationship between child and parent proxy ratings of the child's HRQoL and how measurement of HRQoL may be incorporated into clinical decision-making. Parent and child ratings of the child's health may be affected differently by unequal access to and incongruent understanding of available information, as well as the effect of age difference on interpretation. In particular, parents and children may experience the impact of clinical events on HRQoL very differently. The recent US Federal emphasis on 'patient-centeredness' has helped fuel the development and application of more clinically functional and low-burden HRQoL measures. Future work in pediatric hematopoietic stem cell transplants must seek to capture the experiences and perceptions of all those involved.