Health-related quality of life functioning over a 2-year period in children with end-stage renal disease

Abstract

Patient ratings on global health and physical activity, emotional, and social and disease-specific worry and communication domains were higher (i.e., better) than parent-proxy ratings, confirming the importance of obtaining both sources of information. Patients on dialysis longer, particularly females, reported worse emotional functioning; females also reported more physical appearance concerns. Parents rated older children and those on dialysis longer as functioning worse on multiple global and disease-specific (e.g., fatigue, relationship) domains. Parents also rated children as functioning increasingly worse in school over time. Further, patient ESRD history (acute onset vs. medically managed) impacted how parents viewed the burden of ESRD on their child over time.

Geographic Determinants of Access to Pediatric Deceased Donor Kidney Transplantation

“…9 Dialysis (versus kidney transplantation) is associated with reduced quality of life for patients and families. 10 Children who are transplanted (versus those with CKD not receiving a kidney transplant) experience significant improvements in their intellectual and developmental functioning, which may have long-term benefits for survival into adulthood. 11,12 In light of these benefits of transplantation, the National Organ Transplant Act directs the OPTN to "recognize the differences in health and in organ transplantation issues between children and adults throughout the system and adopt criteria, polices, and procedures that address the unique health care needs of children."…”

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

“…Another possible explanation could be perceptions by providers of lower quality of life among children on dialysis and high burdens placed on parents and caregivers. Although children with ESRD do report diminished HRQOL scores when compared with healthy controls, HRQOL scores for children after renal transplantation appear to be similar to children with other types of chronic diseases (58)(59)(60)(61)(62). Furthermore, it is not clear why future quality of life would result in withholding treatment for a newborn, but not a toddler or older child.…”

Psychosocial support for children and families requiring renal replacement therapy

“…Experience would also suggest that the presence of a psychologist in close proximity to the renal team, particularly participating in a joint clinic, allows early referral for assessment and advice, especially when families are attending from some distance. Recently developed QoL questionnaires are easy to complete by patients and may act as a focus for early or longitudinal assessments [19,20]. There is increasing recognition of depression as being a major mortality risk in adult renal patients and depression may be more frequent than we have recognised in paediatric patients also [43].…”

“…Quality of life studies in children are also increasingly reporting lower values in children with CKD and RRT, although health status may not necessarily equate to children's own rated quality of life [18][19][20]. We are increasingly aware that emotional and behavioural problems occur in children with chronic illness and up to 20 % of children attending a variety of paediatric outpatient clinics had a probable psychiatric disorder [21,22].…”