Search

Acute lymphoblastic leukaemia (ALL) has a high survival rate, but treatment is lengthy with risk of severe side-effects, which may also impact parents' health-related quality of life (HRQOL). We present data on 526 parents of 310 children treated for ALL according to the NOPHO ALL2008-protocol, in Sweden, Finland and Denmark. Parents were asked to complete the 36-Item Short Form Survey (SF-36) at least 6 months after end of treatment and data were compared with Norwegian reference data. Parental background factors were collected via a study-specific questionnaire. Participating parents scored significantly lower than the reference population on both physical and mental summary indexes, but only surpassed a minimal clinically important difference for the mental summary index (Mental Component Summary [MCS]). Mothers scored lower than fathers in the MCS and stopped working and took care of the affected child more often than the fathers. Higher mental HRQOL was associated with male gender and living in Finland or Denmark (compared to Sweden). Correlations within spouses in physical and mental scores were weak to moderate. In conclusion, ALL negatively affects parental HRQOL, especially the mental domains, even after treatment. Findings suggest that mothers are more affected than fathers and may require extra support.

Risk-adapted treatment in acute lymphoblastic leukemia (ALL) relies on genetic information and measurable residual disease (MRD) monitoring. In this proof of concept study, DNA from diagnostic bone marrow (BM) of six children with ALL, without stratifying genetics or central nervous system (CNS) involvement, underwent whole-genome sequencing (WGS) to identify structural variants (SVs) in the leukemic blasts. Unique sequences generated by SVs were targeted with patient-specific droplet digital PCR (ddPCR) assays. Genomic DNA (gDNA) from BM and cell-free DNA (cfDNA) from plasma and cerebrospinal fluid (CSF) were analyzed longitudinally. WGS with 30× coverage enabled target identification in all cases. Limit of quantifiability (LoQ) and limit of detection (LoD) for the ddPCR assays (n = 15) were up to 10

Evidence favours sibling support as a standard of care in paediatric oncology (1). Guidelines published in 1999 by the International Society of Paediatric Oncology (2) recommended involving sibling ...

Background The Department of Clinical Immunology and Biochemistry, Lillebaelt Hospital, Denmark, and TIMEDICO invented and developed the Tempus600®, a pneumatic tube system (PTS). This system is only 2.5 cm in diameter and sends blood tubes directly, without packing before transport. Request forms need not be enclosed, since samples are labeled with patient and barcode ID. At the end of the pipes, a robot receives and places the tubes onto a GLP transport system after the principle of “first in, first out” (FIFO), whereafter the tubes are delivered to centrifuges and analytical equipment. The whole system has decreased the total turnaround time (ToTAT) from 2 to 3 h to Methods Two sets of blood samples were drawn from 100 patients. One set was sent by the Tempus600/GLP robot system, and the other was couriered directly to the laboratory for analysis. Results were compared using difference plots. Results The results for 85 of the components did not deviate from the optimized fast courier reference transport more than could be expected by the analytical variation. O2 saturation, oxyhemoglobin, and partial pressure of oxygen (P o 2) deviated considerably from a clinical point of view. Partial pressure of carbon dioxide (P co 2) results were clinically acceptable for assessing patients with obstructive lung disease for hypercapnia. Conclusions The Tempus600/GLP robot system can be used for transport of the majority of routinely used analytical tests.

Parent-reported Experiences of the Process of Informed Consent in the Randomized Clinical Trials (RCT) in the NOPHO ALL 2008-protocol