Prospektives multizentrisches Register zur Prävalenz, Risikofaktoren und Outcome von febrilen Harnwegsinfektionen nach pädiatrischer Nierentransplantation

Febrile Harnwegsinfektionen (fHWI) nach NTx sind häufig (15 35 %) und beeinflussen die Transplantatfunktion und die Mortalität negativ. Prospektive Daten für das Kindesalter liegen nicht vor. Im November 2006 wurde dieses Register initiiert, um Daten zur Inzidenz, Risikofaktoren und Einfluss von fHWI auf das Nierentransplantatüberleben zu erheben. Es wurden 137 Kinder ≤ 18 Jahren aus 14 europäischen Zentren für pädiatrische Nierentransplantation zum Zeitpunkt der Listung bei Eurotransplant zwischen 2006 2009 erfaßt. Von 98 Patienten (58 Jungen, 40 Mädchen) konnten über 2 Jahre nach NTx Daten erhoben werden. Diese wurden prospektiv zu den Zeitpunkten der NTx und 1, 6, 12 und 24 Monate nach Transplantation erfasst. Im Verlauf von 2 Jahren nach NTx erkrankten 38,7 % der Kinder an einer fHWI. Die Inzidenz ist im Vergleich zur Prätransplantationsperiode (21,4 % fHWI) erhöht (p = 0,002). Kinder mit kongenitaler Anomalie von Nieren und Harntrakt (CAKUT) hatten vor NTx ein höheres Risiko an einer fHWI zu erkranken (38 % vs. 12%, p = 0,005) als Patienten mit einer anderen Grunderkrankung. Nach NTx zeigten sich in der Inzidenz der fHWI keine Unterschiede (CAKUT 48,7% vs. keine CAKUT 32,2 %; p = 0,14). Jungen mit erster fHWI nach NTx hatten im Vergleich zu den Mädchen ein niedrigeres Alter (medianes Alter 4,0 (min 1, max 20) Jahre vs. 13,5 (min 3, max 18) Jahre) (p = 0,002). Zur fHWI hatten die Patienten eine Verschlechterung der Nierenfunktion (eGFR) (p < 0,001). Im Verlauf von 2 Jahren nach NTX zeigte sich kein negativer Einfluss von fHWI auf die Transplantatfunktion und das Transplantatüberleben. Nach pädiatrischer NTx sind fHWI häufig und nehmen im Vergleich zu vor NTx zu. Hiervon sind nicht nur Kinder mit CAKUT oder das weibliche Geschlecht betroffen. Zwei Jahre nach NTx kam es zu einer signifikanten Reduktion der eGFR im gesamten Patientenkollektiv. Das Auftreten einer fHWI hatte hierauf keinen Einfluss

If only I could turn back time—Regret in bereaved parents

Introduction: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents’ experiences after their child's death is vital for supporting these families, parents’ regret is mostly hidden from the treating clinical staff. This study aimed to explore these parents’ regret themes and their impact on their future lives. Methods: An explorative questionnaire was sent to bereaved parents who lost a child to cancer. A total of 26 parents responded to the questionnaire. Data were analyzed using the constant comparative method. Results: Regret experiences were shared by almost all participants. The focus of regret issues include parenting and interaction with the child, reflection on existing values, dealing with the disease, and neglecting the remaining siblings. The regret experience had an impact on prioritizing values, future lifestyle and contacts. Conclusions: Regret seems to be a general phenomenon among bereaved parents and strongly influences the grieving process, in the sense of reflecting on past experiences to reorient for future actions. As this study was explorative, it is significant toward deepening the understanding of bereavement regret in future. These insights are crucial when working with affected families to help them decide important issues they can care about now and will not regret later

Improved upper limb function in non-ambulant children with SMA type 2 and 3 during nusinersen treatment: a prospective 3-years SMArtCARE registry study

Background The development and approval of disease modifying treatments have dramatically changed disease progression in patients with spinal muscular atrophy (SMA). Nusinersen was approved in Europe in 2017 for the treatment of SMA patients irrespective of age and disease severity. Most data on therapeutic efficacy are available for the infantile-onset SMA. For patients with SMA type 2 and type 3, there is still a lack of sufficient evidence and long-term experience for nusinersen treatment. Here, we report data from the SMArtCARE registry of non-ambulant children with SMA type 2 and typen 3 under nusinersen treatment with a follow-up period of up to 38 months. Methods SMArtCARE is a disease-specific registry with data on patients with SMA irrespective of age, treatment regime or disease severity. Data are collected during routine patient visits as real-world outcome data. This analysis included all non-ambulant patients with SMA type 2 or 3 below 18 years of age before initiation of treatment. Primary outcomes were changes in motor function evaluated with the Hammersmith Functional Motor Scale Expanded (HFMSE) and the Revised Upper Limb Module (RULM). Results Data from 256 non-ambulant, pediatric patients with SMA were included in the data analysis. Improvements in motor function were more prominent in upper limb: 32.4% of patients experienced clinically meaningful improvements in RULM and 24.6% in HFMSE. 8.6% of patients gained a new motor milestone, whereas no motor milestones were lost. Only 4.3% of patients showed a clinically meaningful worsening in HFMSE and 1.2% in RULM score. Conclusion Our results demonstrate clinically meaningful improvements or stabilization of disease progression in non-ambulant, pediatric patients with SMA under nusinersen treatment. Changes were most evident in upper limb function and were observed continuously over the follow-up period. Our data confirm clinical trial data, while providing longer follow-up, an increased number of treated patients, and a wider range of age and disease severity

On judging the credibility of climate predictions

Incorporating a prediction into future planning and decision making is advisable only if we have judged the prediction's credibility. This is notoriously difficult and controversial in the case of predictions of future climate. By reviewing epistemic arguments about climate model performance, we discuss how to make and justify judgments about the credibility of climate predictions. We propose a new bounding argument that justifies basing such judgments on the past performance of possibly dissimilar prediction problems. This encourages a more explicit use of data in making quantitative judgments about the credibility of future climate predictions, and in training users of climate predictions to become better judges of credibility. We illustrate the approach using decadal predictions of annual mean, global mean surface air temperature

Febrile urinary tract infection after pediatric kidney transplantation: a multicenter, prospective observational study

BACKGROUND: Febrile urinary tract infections (fUTIs) are common after kidney transplantation (KTx); however, prospective data in a multicenter pediatric cohort are lacking. We designed a prospective registry to record data on fUTI before and after pediatric KTx. METHODS: Ninety-eight children (58 boys and 40 girls) ≤ 18 years from 14 mid-European centers received a kidney transplant and completed a 2-year follow-up. RESULTS: Posttransplant, 38.7% of patients had at least one fUTI compared with 21.4% before KTx (p = 0.002). Before KTx, fUTI was more frequent in patients with congenital anomalies of kidneys and urinary tract (CAKUT) vs. patients without (38% vs. 12%; p = 0.005). After KTx, fUTI were equally frequent in both groups (48.7% vs. 32.2%; p = 0.14). First fUTI posttransplant occurred earlier in boys compared with girls: median range 4 vs. 13.5 years (p = 0.002). Graft function worsened (p < 0.001) during fUTI, but no difference was recorded after 2 years. At least one recurrence of fUTI was encountered in 58%. CONCLUSION: This prospective study confirms a high incidence of fUTI after pediatric KTx, which is not restricted to patients with CAKUT; fUTIs have a negative impact on graft function during the infectious episode but not on 2-year graft outcome

The German Twin Family Panel (TwinLife)

Mönkediek B, Lang V, Weigel L, et al. The German Twin Family Panel (TwinLife). Twin Research and Human Genetics. 2019;22(6):540-547.The German Twin Family Panel (TwinLife) is a German longitudinal study of monozygotic and dizygotic same-sex twin pairs and their families that was designed to investigate the development of social inequalities over the life course. The study covers an observation period from approximately 2014 to 2023. The target population of the sample are reared-together twins of four different age cohorts that were born in 2009/2010 (cohort 1), in 2003/2004 (cohort 2), in 1997/1998 (cohort 3) and between 1990 and 1993 (cohort 4). In the first wave, the study included data on 4097 twin families. Families were recruited in all parts of Germany so that the sample comprises the whole range of the educational, occupational and income structure. As of 2019, two face-to-face, at-home interviews and two telephone interviews have been conducted. Data from the first home and telephone interviews are already available free of charge as a scientific use-file from the GESIS data archive. This report aims to provide an overview of the study sample and design as well as constructs that are unique in TwinLife in comparison with previous twin studies — such as an assessment of cognitive abilities or information based on the children’s medical records and report cards. In addition, major findings based on the data already released are displayed, and future directions of the study are presented and discussed

An Introduction to the German Twin Family Panel (TwinLife)

Lang V, Weigel L, Mönkediek B, et al. An Introduction to the German Twin Family Panel (TwinLife). Jahrbücher für Nationalökonomie und Statistik. 2020;240(6):837-847