Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application

Abstract

Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. HRQOL measures are also increasingly proposed for use in clinical practice settings to inform treatment decisions. In settings where HRQOL measures have been utilized with adults, physicians report such measures as useful, some physicians alter their treatment based on patient reports on such instruments, and patients themselves generally feel the instruments to be helpful. However, there is a dearth of studies evaluating the clinical utility of HRQOL measurement in pediatric clinical practice. This paper provides an updated review of the literature and proposes a precept governing the application of pediatric HRQOL measurement in pediatric clinical practice. Utilizing HRQOL measurement in pediatric healthcare settings can facilitate patient-physician communication, improve patient/parent satisfaction, identify hidden morbidities, and assist in clinical decision-making. Demonstrating the utility of pediatric HRQOL measurement in identifying children with the greatest needs, while simultaneously demonstrating the cost advantages of providing timely, targeted interventions to address those needs, may ultimately provide the driving force for incorporating HRQOL measurement in pediatric clinical practice.

Testing parent dyad interchangeability in the parent proxy-report of PedsQL™ 4.0: a differential item functioning analysis

“…Parents are now used as proxy respondents, particularly in the case of younger children, or when children suffer from a particular health condition; they also generally provide additional information on children's HRQoL [1,2,[4][5][6][7][8][9]. Therefore, understanding the parents' responses to their children's HRQoL is crucial, because their judgements of their child's wellbeing can give valuable insights for clinicians [10][11][12].…”

Assessment of Health-Related Quality of Life and Patient Satisfaction in Children and Adolescents with Growth Hormone Deficiency or Idiopathic Short Stature – Part 1: A Critical Evaluation of Available Tools

“…Current models of healthcare utilization also take into account characteristics of patients (including demographics, attitudes and beliefs) which influence treatment decisions and patient satisfaction. While it is unclear whether children would respond similarly to adults to questions about satisfaction, parents of pediatric patients are likely to report satisfaction or dissatisfaction with medical care based on their perceptions of their child’s HrQoL outcomes as a result of treatment [14]. The importance of patient satisfaction as a factor in medical decision-making in children is rising.…”

The PedsQL™ 4.0 Generic Core Scales Young Adult Version

“…THERE HAS been a significant increase in the development and utilization of pediatric health-related quality of life (HRQOL) measures over the past 10 years in an effort to improve patient health and well-being and to determine the value of healthcare services (Matza, Swensen, Flood, Secnik, & Leidy, 2004;Varni, Burwinkle, & Lane, 2005). A generic HRQOL instrument must be multidimensional, consisting at the minimum of the physical, psychological (including emotional and cognitive), and social health dimensions delineated by the World Health Organization (FDA, 2006;World Health Organization, 1948).…”