Impact of Renal Replacement Therapy in Childhood on Long-Term Socioprofessional Outcomes: A 30-year Follow-Up Study.

OBJECTIVE: To evaluate socioprofessional outcomes after 30 years of renal replacement therapy (RRT) and explore predictors of these outcomes. STUDY DESIGN: The cohort comprised all Dutch patients, born before 1979, who started RRT at age <15 years in 1972-1992. Outcomes including family life, educational attainment, and professional life were obtained in 2000 and 2010 in 80 out of 152 survivors. Participants also completed the Course of Life Questionnaire in 2000, which retrospectively assessed the achievement of developmental milestones while growing up. Socioprofessional outcomes in 2010 were compared with the age-matched general population and with outcomes obtained in 2000. Logistic regression analysis was performed to identify determinants of socioprofessional outcomes. RESULTS: Mean age and time on RRT in 2010 were 40.6 years (range 32.1-52.4) and 28.9 years (range 18.1-39.7), respectively. Patients were less likely to be employed (62.5% vs 81.0%) and have children (28.8% vs 64.8%) compared with the age-matched general population. Comorbidities, dialysis, short stature, and fewer milestones on autonomy were associated with adverse outcomes. Compared with 2000, in 2010 more patients lived with a partner (68.8% vs 43.0%), and more patients had completed a high level educational degree (22.5% vs 13.9%). However, more patients were unable to work on medical grounds in 2010 (36.3% vs 16.3%). CONCLUSIONS: Survivors of pediatric end-stage renal disease may gain social autonomy and optimal educational attainment at an older age compared with their general population counterparts. Awareness among health care professionals of the potential of these children and tailored psychosocial interventions might improve socioprofessional development.

Long-term quality of life and social outcome of childhood end-stage renal disease.

OBJECTIVE: To assess quality of life (QoL) and social status after 30 years of renal-replacement therapy (RRT) and to explore determinants of this QoL. STUDY DESIGN: The cohort comprised all Dutch patients, born before 1979, who started RRT at age<15 years in 1972-1992. All patients still alive in 2010 were asked to complete questionnaires on QoL (RAND-36) and sociodemographic outcomes. Scores were compared with those in the age-matched general population and with previous patient scores obtained in 2000. We performed logistic regression analysis for prediction of QoL outcomes. RESULTS: A total of 89 of 152 patients still alive in 2010 participated. Compared with the general population, QoL more often was impaired in patients receiving dialysis for most physical domains, in transplanted patients only on general health perception. Both transplanted and dialysis patients had normal or high scores on mental health. Scores in most physical domains were lower than in 2000. Patients were employed less often (61.8% vs 81.0%), had fewer offspring (31.5 vs 64.8%), and were less likely to have an income equal to or above average (34.8% vs 55.7%) compared with the general population. Disabilities, comorbidity, and unemployment were associated with impaired QoL. CONCLUSIONS: After 30 years of RRT, adult survivors of pediatric end-stage renal disease have an impaired physical but a good mental QoL. The decrease of general health perception and physical functioning over time is worrying and may further hamper employment status and social functioning of these relatively young patients.

Development and validation of the distress thermometer for parents of a chronically ill child.

OBJECTIVE: To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress. STUDY DESIGN: Parents of a chronically ill child (0-18 years) were recruited via announcements or were actively approached at the outpatient clinics of the Emma Children's Hospital/Academic Medical Center and Vrije Universiteit Medical Center. We modeled the development of the DT-P on the Distress Thermometer used in oncology medical care. The DT-P consists of a thermometer score from 0 (no distress) to 10 (extreme distress) and a problem list (practical, social, emotional, physical, cognitive, and parenting domains). The DT-P was validated with the Hospital Anxiety and Depression Scale (HADS) and the Parenting Stress Index. RESULTS: The mean thermometer score of the 706 participating parents was 3.7 (SD 3.0). The thermometer score and the scores in the practical, emotional, physical, and cognitive problem domains were strongly related to anxiety, depression, and the total score of the HADS (0.55 ≤ r ≤ 0.72). The thermometer score and all problem domain scores were moderately-to-strongly related to the Parenting Stress Index (0.38 ≤ r ≤ 0.63). A cutoff-score of 4 correctly identified 86% of "clinical HADS cases" (sensitivity) and 67% of "nonclinical HADS cases" (specificity). CONCLUSIONS: We developed the DT-P and examined its diagnostic utility in a large sample. The DT-P appeared to be a valid and useful short screening-tool for identifying parental distress.