The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood

Abstract

Little is known about the impact of the course of life of children with end-stage renal disease (ESRD) on their quality of life in adulthood. We therefore assessed the course of life of adult patients with onset of ESRD at an age of <15 years between 1972 and 1992 and compared it with that of the general population. Furthermore, we explored how course of life is associated with quality of life (QoL) in young adulthood. A total of 75 young adult patients who had had ESRD since childhood, aged between 20 years and 30 years, completed the RAND-36 Health Survey and a questionnaire, which retrospectively assesses the achievement of development milestones. Patients achieved fewer milestones than peers with respect to autonomy, social, and psycho-sexual development, and displayed less risk behaviour. Patients who achieved fewer social milestones while growing up experienced more emotional problems and less vitality, and they had a lesser overall mental quality of life. Paediatric nephrologists should pay more attention to the development of social and independent functioning of children with ESRD in order to prepare them for active participation in society in adult life.

Doing ‘technological time’ in a pediatric hemodialysis unit: An ethnography of children

“…Methodological shortcomings in the studies reviews included relatively small sample and subgroups sizes or subgroups were uneven in numbers (Goldstein et al, 2006;Grootenhuis et al, 2006;Groothoff et al, 2005;McKenna et al, 2006;Nicholas et al, 2011;Snethen et al, 2001;Snethen et al, 2004;Water, 2008). Also, some researchers (Goldstein et al, 2006;Grootenhuis et al, 2006;Groothoff et al, 2005;McKenna et al, 2006) did not indicate calculation of sample size so that adequacy cannot be assessed.…”

“…Grootenhuis et al (2006) and Groothoff et al (2005) studied the late physical, social, and psychosexual effects of childhood onset ESRD among Dutch adults using quality of life and other measures. Grootenhuis et al (2006) found that their sample of 39 men and 36 women between 20 to 30 years of age had reached fewer milestones in the areas of autonomy (i.e. at home or outside of home), social (i.e.…”

“…For example, Goldstein et al (2006), Grootenhuis et al (2006), Groothoff et al (2005), andMcKenna et al (2006) concluded that children on renal replacement therapies, especially dialysis, have lower quality of life and increased depression and anxiety than healthy children. In addition, Nicholas et al (2011) concluded that children with ERD face multiple psychosocial challenges, including issues with normalcy and absences from school and peer-related activities and many took responsibility for the management of their ESRD and treatment, particularly with increasing age.…”

“…Finally, a number of quantitative (Goldstein et al, 2006;Grootenhuis et al, 2006;Groothoff et al, 2005;Snethen et al, 2001) and qualitative studies (Hagren et al, 2001;Heaton et al, 2005;Nagle, 1998;Place, 2000, Waters, 2008 have demonstrated that the time, setting, 26 and technologies of hemodialysis have impact on recipients. Yet, researchers focused on children with ESRD have conceptualized children in the context of biomedical or psychosocial models of illness or have focused on quality of life issues.…”

Transtornos mentais e qualidade de vida em crianças e adolescentes com doença renal crônica e em seus cuidadores

“…These patients presented a delayed social, psychological and sexual development, in addition to decreased autonomy when adults. 27,28 In the study of Rosenkranz et al,…”