Quality of life in children with chronic kidney disease (with child and parent assessments)

Abstract

Herein the results of a multicenter study from the Turkish Pediatric Kidney Transplantation Study Group are reported. The aims of this study were to compare the quality of life (QoL) scores of Turkish children who are dialysis patients (DP), renal transplant recipients (TR), and age-matched healthy controls and to compare child-self and parent-proxy scores. The Turkish versions of the Kinder Lebensqualität Fragebogen (KINDL(R)) questionnaires were used as a QoL measure. The study group consisted of 211 children and adolescents with chronic kidney disease (CKD) (139 TR and 72 DP aged between 4-18 years; 13.7 +/- 3.5 years) from 11 university hospitals, 129 parents of these patients, 232 age-matched healthy children and adolescents (aged between 4-18 years; 13.1+/-3.5 years) and 156 of their parents. Patients with CKD had lower scores in all subscales except for physical well-being than those in the control group. TR had higher scores in physical well-being, self-esteem, friends' subscales, and total scores than DP. Child-self scores were lower than parent-proxy scores, especially in CKD, DP, and control groups. Concordance between parent-proxy and child-self reports in the TR, DP, CKD, and control groups was only moderate for the majority of subscales (r = 0.41-0.61). It was concluded that parent-proxy scores on the QoL were not equivalent to child-self scores and that evaluating both children's and parents' perspectives were important. Additionally, psychosocial counseling is crucial not only for patients with CKD but also for their parents.

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

“…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].…”

Relationship Between Sleep and Life Quality of Children with Monosemptomatic Nocturnal Enuresis by Assessing Actigraphy

“…Her bir boyut için maddelere verilen puanların sayılması, 0-100 arasında ölçeklendirilecek şekilde dönüştürülmesi ve özetlenmesi ile hesaplanır. Yüksek puan iyi yaşam kalitesinin göstergesidir (11,12).…”

“…Bir başka çalışmada (18); Kid-KINDL anketini MEN'li 44 çocuk ile 27 sağlıklı çoçuğa uygulamış, "fiziksel iyilik" ve "arkadaş ilişkileri"nde etkilenim olduğunu görmüşlerdir. Çalışmamızla benzer olan bu sonuçlar, özellikle ergenlik yaş gruplarında tekrarlayan (12,20). Çocukluk yaş grubunda pek çok hastalık uyku kalitesini etkileyebilmektedir.…”