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Furth Introduction In addition to important indicators of health outcomes such as growth, cardiovascular health, and infection rates, healthcare providers are increasingly invested in evaluating and considering the quality of life (QOL) of patients on dialysis and their families It is now considered important, and often required, to assess QOL as a key outcome alongside other measures of health outcomes Indeed, for patients with end-stage renal disease (ESRD) in the United States, yearly assessment of QOL is mandated by the Centers for Medicaid and Medicare Services [3] The World Health Organization defines quality of life as individuals’ “perception of their position in life, in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns” [48] It is meant to be a broad concept that reflects an individual’s physical health, psychological state, personal beliefs, social relation- R J Johnson (*) Division of Developmental and Behavioral Health, University of Missouri Kansas City School of Medicine, Children’s Mercy Kansas City, Kansas City, MO, USA e-mail: rejohnson@cmh.edu S L Furth Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, USA ships, and his or her relationships to important features of the environment It is widely recognized that chronic disease and its treatment may significantly impact patients’ QOL, including psychological health (mood, attention, concentration, learning), social functioning (quality of relationships, participation in normative social activities), physical health, and educational or vocational outcomes (school attendance, academic achievement, and attainment of vocational goals) Within the context of disease, quality of life is often referred to as health-related quality of life (HRQOL), recognizing that disease may have a unique impact on a person’s life, but still defining HRQOL as a multidimensional construct Most measures include questions or ratings that tap into the aspects of physical, psychological, social, and educational or vocational functioning described above Historically, parents or caregivers have been relied upon to describe a child’s HRQOL, but current practice emphasizes the importance of assessing both caregiver perceptions and the child’s own perceptions of his or her HRQOL. One reason for this is that many studies have identified discrepancies between parent-proxy and youth self-report of HRQOL [2, 27–29], so gathering information from both sources is best practice and believed to provide a more comprehensive picture of HRQOL [4, 7, 21] Information gathered about patient- and parent-perceived HRQOL is primarily used to assess individual patient outcomes and to © Springer Nature Switzerland AG 2021 B A Warady et al (eds.), Pediatric Dialysis, https://doi.org/10.1007/978-3-030-66861-7_40 785 ... Dial Transplant 2011;26:3822–4 127 Maluccio M, Sharma V, Lagman M, Vyas S, Yang H, Li B, Suthanthiran M. Tacrolimus enhances transforming growth factor-beta1 expression and promotes tumor progression... Zecchini S, Ravera S, Manili L, Cancarini G. Encapsulating peritoneal sclerosis in an Italian center: thirty-year experience J Nephrol 2016;29:259–67 165 Petrie MC, Traynor JP, Mactier RA. Incidence... vocational outcomes (school attendance, academic achievement, and attainment of vocational goals) Within the context of disease, quality of life is often referred to as health-related quality of life