RESUMO
OBJECTIVE: To determine the range and heterogeneity of outcomes reported in randomized controlled trials of interventions for children with chronic kidney disease (CKD). STUDY DESIGN: The Cochrane Kidney and Transplant Specialized Register was searched to March 2016. Randomized trials involving children across all stages of CKD were selected. All outcome domains and measurements were extracted from included trials. The frequency and characteristics of the outcome domains and measures were evaluated. RESULTS: From 205 trials included, 6158 different measurements of 100 different outcome domains were reported, with a median of 22 domains per trial (IQR 13-41). Overall, 52 domains (52%) were surrogate, 38 (38%) were clinical, and 10 (10%) were patient-reported. The 5 most commonly reported domains were blood pressure (76 [37%] trials), relapse/remission (70 [34%]), kidney function (66 [32%]), infection (61 [30%]), and height/pubertal development (51 [25%]). Mortality (14%), cardiovascular disease (4%), and quality of life (1%) were reported infrequently. The 2 most frequently reported outcomes, blood pressure and relapse/remission, had 56 and 81 different outcome measures, respectively. CONCLUSIONS: The outcomes reported in clinical trials involving children with CKD are extremely heterogeneous and are most often surrogate outcomes, rather than clinical and patient-centered outcomes such as cardiovascular disease and quality of life. Efforts to ensure consistent reporting of outcomes that are important to patients and clinicians will improve the value of trials to guide clinical decision-making. In our study, non-English articles were excluded.
Assuntos
Avaliação de Resultados em Cuidados de Saúde , Insuficiência Renal Crônica/terapia , Adolescente , Fatores Etários , Pressão Sanguínea , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Testes de Função Renal , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Recidiva , Adulto JovemRESUMO
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.
Assuntos
Falência Renal Crônica/terapia , Terapia de Substituição Renal , Classe Social , Adolescente , Adulto , Criança , Escolaridade , Emprego , Família , Feminino , Seguimentos , Humanos , Falência Renal Crônica/complicações , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Países Baixos , Qualidade de Vida , Análise de Regressão , Estudos Retrospectivos , Inquéritos e Questionários , Sobreviventes , Resultado do TratamentoRESUMO
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.
Assuntos
Falência Renal Crônica/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Criança , Feminino , Seguimentos , Nível de Saúde , Humanos , Falência Renal Crônica/terapia , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Países Baixos , Terapia de Substituição Renal/métodos , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To describe employment achievement and social independence of adults with childhood end-stage renal disease (ESRD) and to explore determining factors. STUDY DESIGN: Employment, occupational level, living arrangements, social engagements, and subjective health perception were cross-sectionally established between 1998 and 2000 in 144 of all living 187 adult Dutch patients with ESRD with an onset at age 0 to 15 years between 1972 and 1992. Potential clinical determinants were established by means of a review of all medical charts. RESULTS: Compared with age-matched Dutch citizens, patients were more often involuntarily unemployed (19.4% vs 11.1%), had a lower occupational level, more often still lived with their parents, and more often had no partner. A low occupational level was associated with a dialysis duration >8 years (OR, 9.6; 95% CI, 1.9-47.6); living at the parental home was associated with the male sex (OR, 3.4; 95% CI, 1.5-7.8) and with a dialysis duration >8 years (OR, 3.7; 95% CI, 1.3-10.2). CONCLUSION: Prolonged dialysis during childhood may decrease the ability to gain high-skilled professions and social independence. Unemployment is twice as high in adult patients with childhood ESRD than in healthy persons, but more than twice as low as compared with young ESRD patients with an adult onset of the disease, according to previous reports.