Involvement of nurses in end-of-life discussions for severely disabled children.

BACKGROUND: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD. METHOD: In a retrospective, qualitative study, we conducted semi-structured interviews with the nurses of 12 children with PIMD for whom an EoLD was made within the past 2 years. RESULTS: Parents primarily discuss EoLDs with nurses before and after the meeting with the physician. Nurses who were involved in EoL discussions with parents and physicians assisted them by giving factual information about the child and by providing emotional support. Some nurses, especially nurses from ID-care services, were not involved in EoL discussions, even if they had cared for the child for a long period of time. Some of the nurses had moral or religious objections to carrying out the decisions. CONCLUSION: Most nurses were not involved in EoL discussions with parents and physicians in the hospital. Excluding nurses from EoL discussions can cause them moral distress. The involvement of nurses in EoL discussions for children with PIMD should be improved, especially by involving nurses from ID-care services. Because these nurses are usually familiar with the child, they can be valuable sources of information about the child's quality of life.

Considering quality of life in end-of-life decisions for severely disabled children.

BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown. AIMS: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands. METHODS: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years. RESULTS: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS. CONCLUSIONS: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions.

How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities.

BACKGROUND: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. AIMS: The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. METHODS: In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years. RESULTS: A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept. CONCLUSION: The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.

End-of-life decision-making for children with severe developmental disabilities: The parental perspective.

BACKGROUND AND AIMS: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. METHODS AND PROCEDURES: We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made. OUTCOMES AND RESULTS: We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive. CONCLUSIONS AND IMPLICATIONS: Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team.

The prevalence of peripheral arterial disease in middle-aged people with intellectual disabilities.

Peripheral arterial disease (PAD) is a manifestation of atherosclerosis below the bifurcation of the abdominal aorta. PAD increases the risk of cardiovascular disease and associated mortality. Little is known about the prevalence of PAD in middle-aged persons with intellectual disabilities (ID). We determined the prevalence of PAD among people with ID aged 40-59 years. Independent associations between PAD and patient and care characteristics were explored. A multi-center cross-sectional observational study was conducted in four care providing agencies for people with ID in the Netherlands. We included 407 participants with mild to profound ID aged 40-59 years, receiving medical care from specialized ID physicians. The ankle-brachial index was used to diagnose PAD. The overall prevalence of PAD was 8.4% (95% CI=6.0-11.4%), with no significant differences between age groups 40-49 years (8.2%) and 50-59 years (8.5%). None of the participants had been diagnosed with PAD prior to this study and only one participant with PAD had PAD-related symptoms (1/34). Wheelchair dependence was independently associated with PAD (OR=5.43). Prevalence of PAD among people with ID is high, which is especially remarkable in age group 40-49 years. Physicians need to be aware of this high prevalence of PAD and the increased risk of cardiovascular disease in (young) people with ID.

The fabrication of ordered arrays of exchange biased Ni/FeF2 nanostructures.

The fabrication of ordered arrays of exchange biased Ni/FeF(2) nanostructures by focused ion beam lithography is reported. High quality nano-elements, with controlled removal depth and no significant re-deposition, were carved using small ion beam currents (30 pA), moderate dwell times (1 micros) and repeated passages over the same area. Two types of nanostructures were fabricated: square arrays of circular dots with diameters from 125 +/- 8 to 500 +/- 12 nm and periodicities ranging from 200 +/- 8 to 1000 +/- 12 nm, and square arrays of square antidots (207 +/- 8 nm in edge length) with periodicities ranging from 300 +/- 8 to 1200 +/- 12 nm. The arrays were characterized using scanning ion and electron microscopy, and atomic force microscopy. The effect of the patterning on the exchange bias field (i.e., the shift in the hysteresis loop of ferromagnetic Ni due to proximity to antiferromagnetic FeF(2)) was studied using magneto-transport measurements. These high quality nanostructures offer a unique method to address some of the open questions regarding the microscopic origin of exchange bias. This is not only of major relevance in the fabrication and miniaturization of magnetic devices but it is also one of the important proximity phenomena in nanoscience and materials science.

Evolution of the local superconducting density of states in ErRh4B4 close to the ferromagnetic transition.

We present local tunneling spectroscopy experiments in the superconducting and ferromagnetic phases of the reentrant superconductor ErRh4B4. The tunneling conductance curves jump from showing normal to superconducting features within a few mK close to the ferromagnetic transition temperature, with a clear hysteretic behavior. Within the ferromagnetic phase, we do not detect any superconducting correlations. Within the superconducting phase we find a peculiar V-shaped density of states at low energies, which is produced by the magnetically modulated phase that coexists with superconductivity just before ferromagnetism sets in.

Spin resolved photoelectron spectroscopy of Fe(3)O(4): the case against half-metallicity.

Many materials have been theoretically predicted to be half-metallic, and hence suitable for use as pure spin sources in spintronic devices. Yet to date, remarkably few of these predictions have been experimentally verified. We have used spin polarized photoelectron spectroscopy to study one candidate half-metallic system, Fe(3)O(4). Such experiments are normally hampered by difficulties in producing clean stoichiometric surfaces with a polarization that is truly representative of that of the bulk. However, by utilizing higher photon energies than have traditionally been used for such experiments, we can study polarization in 'as received' samples, essentially 'looking through' the disrupted surface. High quality, strain relieved, ex situ prepared Fe(3)O(4) films have been thoroughly characterized by diffraction, transport and magnetometry studies of their crystallographic, electronic and magnetic properties. The spectroscopic results are found to agree fairly closely with previously published experimental data on in situ grown thin films and cleaved single crystals. However, despite the higher photoelectron kinetic energies of the experiment, it has not been possible to observe 100% polarization at the Fermi level. Hence, our data do not support the claim of true half-metallicity for Fe(3)O(4).

Alice falls into a black hole: entanglement in noninertial frames.

Two observers determine the entanglement between two free bosonic modes by each detecting one of the modes and observing the correlations between their measurements. We show that a state which is maximally entangled in an inertial frame becomes less entangled if the observers are relatively accelerated. This phenomenon, which is a consequence of the Unruh effect, shows that entanglement is an observer-dependent quantity in noninertial frames. In the high acceleration limit, our results can be applied to a nonaccelerated observer falling into a black hole while the accelerated one barely escapes. If the observer escapes with infinite acceleration, the state's distillable entanglement vanishes.

Two-stage magnetization reversal in exchange biased bilayers.

MnF(2)/Fe bilayers exhibit asymmetric magnetization reversal that occurs by coherent rotation on one side of the loop and by nucleation and propagation of domain walls on the other side of the loop. Here, we show by polarized neutron reflectometry, magnetization, and magnetotransport measurements that for samples with good crystalline "quality" the rotation is a two-stage process, due to coherent rotation to a stable state perpendicular to the cooling field direction. The result is remarkably asymmetrically shaped hysteresis loops.

Psychological health and sense of humor.

Scores on the Multidimensional Sense of Humor Scale (MSHS) are shown to be related positively to a number of factors associated with psychological health, such as optimism and self esteem, and negatively with signs of psychological distress such as depression. Humor is a multidimensional construct that seems to be intimately related to quality of life.

High-level sensitivity of quantitative pp65 cytomegalovirus (CMV) antigenemia assay for diagnosis of CMV disease in AIDS patients and follow-up.

Cytomegalovirus (CMV) antigenemia was evaluated in 174 patients positive for human immunodeficiency virus. Antigenemia could be detected in 96.7% of patients with CMV disease, 76.9% of patients suffering from a relapse of the disease, and 11.4% of asymptomatic patients with CD4 levels of < 100 cells per microliter. No antigenemia was detected in patients with CD4 levels of 250 to 500 cells per microliter. Specificity and the positive predictive value for CMV disease were increased only if more than 5 positive cells per slide were considered. However, CMV disease may also occur in patients with low-grade antigenemia.

Nerve growth factor stimulates clonal growth of human lung cancer cell lines and a human glioblastoma cell line expressing high-affinity nerve growth factor binding sites involving tyrosine kinase signaling.

The growth of a panel of 22 different human tumor, leukemia, and lymphoma cell lines was examined in a human tumor cloning assay in agar or methylcellulose and a tritiated thymidine uptake assay. The cultures were performed in the absence or presence of increasing concentrations (0.5-500 ng/ml) of nerve growth factor (NGF). The growth of 17 of the 22 cell lines was not significantly and reproducibly affected by NGF. There was minor (1.2-fold) but reproducible stimulation of clonal growth in one glioblastoma cell line (86-HG-39) by NGF, but in this cell line NGF induced no growth modulation in a tritiated thymidine uptake assay. However, clonal growth of another glioblastoma cell line (87-HG-31) and all three lung cancer cell lines tested (HTB 119, HTB 120, CCL 185) could be stimulated up to 3-fold by NGF with a dose-response relationship for the growth factor. Growth stimulation by NGF could be completely reversed by neutralizing anti-NGF antibody and by the tyrosine kinase inhibitor genistein. Evaluation of secondary plating efficiency revealed the stimulation of colony formation as representing self-renewal and not terminal differentiation. Reverse transcriptase-PCR experiments in the five responding cell lines showed expression of both low-affinity NGF receptor (glycoprotein 75) and c-trk transcripts on the mRNA level. Of the five responding cell lines, only 86-HG-39, the cell line with the lowest responsiveness, revealed low-affinity NGF receptor on the protein level; the other four cell lines with high responsiveness, including the three lung cancer cell lines, expressed no low-affinity NGF receptor as shown by fluorescence-activated cell sorter analysis and immunoprecipitation using the ME 20.4 antibody. Immunoprecipitation using anti-trk antibodies was negative in all five responding cell lines. However, binding studies with iodinated NGF showed only low-affinity binding on the 86-HG-39 cell line and only high-affinity binding on the high-responder cell lines CCL 185 and 87-HG-31. In summary, our data suggest that NGF can be operative in stimulation of clonal growth of malignant tumor cells. High-affinity but not low-affinity binding sites mediate signal transduction for clonal growth and signaling involves tyrosine kinase activity.

Thromboxane B2 blood levels and incipient system clotting in heparin free hemodialysis.

Clotting of the extracorporal system is the main complication of heparin free hemodialysis performed in patients with an increased risk of bleeding. The authors compared thromboxane B2, platelet factor 4, beta-thromboglobulin, and thromboelastography in systemic blood as markers of thrombogenicity during hemodialysis in eight patients with an increased risk of bleeding. Measurements were performed during hemodialysis with and without heparin. Thromboxane B2 levels in centrifuged blood were evaluated by an 125I assay system using a special extraction with mini-columns and magnetic separation (normal 32-64 pg/ml). At the onset of hemodialysis, thromboxane B2 concentrations in the inflow arterial blood line were lower than normal (30 +/- 23 pg/ml). Thromboxane B2 increased (97 +/- 105 versus 40 +/- 26 pg/ml) and was significantly higher during heparin free hemodialysis than during hemodialysis with heparin (p = 0.01, Wilcoxon matched pairs signed rank test). The highest values were observed in 5 cases with signs of clotting (152 +/- 122 pg/ml). Among the investigated parameters, thromboxane B2 proved to be the most significant serum parameter correlated with platelet activation and the consequently increased risk of incipient clotting during heparin free hemodialysis.

Investigation and management of Clostridium difficile colonisation in a paediatric oncology unit.

Little is known about Clostridium difficile infection in children with cancer but a presumed outbreak has previously been described. The carriage rate before admission to hospital and morbidity is reported to be high, especially in younger children. The prevalence of C difficile infection on a paediatric oncology ward was monitored from June 1991 to May 1992. Twenty eight (13%) of 214 children were found to be infected. Though the temporal distribution suggested an outbreak, polyacrylamide gel electrophoresis identified several different types. Unlike previous reports, infection appeared to be possibly endogenous or possibly environmental in origin rather than due to cross infection; the morbidity was low and age was not a determinant for infection. The duration of hospital stay and the primary diagnosis were found to be determinants for infections, those with lymphoid malignancies being at the highest risk. The diagnostic category at greatest risk were those most intensively treated, with protracted neutropenia and prolonged antibiotic exposure. Early identification of cases and prompt institution of simple control measures will prevent cross infection. It is therefore important that diarrhoea is not accepted as a normal symptom of cancer chemotherapy and stool specimens are sent for full bacteriological and viral investigation.

Non-Hodgkin's lymphoma and Klinefelter syndrome.

Patients with a 47, XXY karyotype (Klinefelter syndrome) appear to have an increased risk of developing a malignancy in adulthood, usually cancer of the breast, extragonadal germ cell tumor, and acute nonlymphoblastic leukemia. There is growing evidence to show that these patients also have an increased risk of developing a malignancy in childhood. There are reports describing the development of acute lymphoblastic leukemia, retinoblastoma, and rhabdomyosarcoma in children with a 47, XXY or mosaic 47, XXY/46, XY karyotype. We report a child with a bone metastasizing, B-cell lineage, non-Hodgkin's lymphoma (NHL) who was found to have a 47, XXY karyotype in both the tumor and constitutional cells.

Abnormal TNF production in prediabetic BB rats is linked to defective CD45R expression.

The genetic basis and diabetes association of aberrant tumour necrosis factor-alpha (TNF-alpha) production by activated peritoneal macrophages in diabetes-prone (dp) biobreeding (BB) rats was analysed. Southern blot analysis could not detect a restriction fragment length polymorphism for the TNF gene distinguishing dp BB rats from Wistar (Wi) rats and diabetes resistant (dr) BB rats. The contiguous genetic arrangement of lymphotoxin (LT) and TNF genes described in mouse and man was also found in the rat by cloning a chromosomal region covering both genes. In search of a polymorphic marker we amplified a (CA)n:(GT)n microsatellite in the TNF promoter region by polymerase chain reaction (PCR). We detected two alleles, (CA)26 and (CA)33, but no correlation with diabetes risk was seen. Crosses between dp BB rats and Wi or Lewis. 1A (Lew. 1A) rats, respectively, indicated that aberrant TNF-alpha production of activated macrophages is inherited dominantly with only weak penetrance. Analysis of the F2 generation and backcrosses with the two parental strains showed that aberrant TNF production co-segregates with lymphopaenia and defective CD45R expression, markers known to reflect a diabetes predisposing gene(s) outside the RT1 complex. We conclude that a single linkage group is responsible for both aberrant TNF production and defective T-cell maturation in dp BB rats.

The interleukin-6 gene locus seems to be a preferred target site for retrotransposon integration.

Recently, we have observed the insertion of a retrotransposon into the interleukin-6 (Il-6) locus of a mouse somatic cell line. Here we report the characterization of Il-6 genomic regions from both mouse and rat. Restriction site analysis, DNA sequence analysis, and computer-assisted search revealed eight retrotransposon-like elements distributed over a 25 kilobase (kb) mouse Il-6 region. In the rat, five different retrotransposons have been identified within a 17 kb Il-6 region. The retrotransposons belong to the LINE-, Alu I or Alu II families, or to a rat specific class of retrotransposons. Some of the retrotransposons exhibit characteristic features such as target site duplication and a poly A-tract. Remarkably, several retrotransposons map to different chromosomal locations in the mouse and rat. A genealogical tree of mouse, rat, and human Il-6 loci demonstrates a series of retrotranspositions that recently occurred in evolution. These results suggest that the Il-6 locus serves as a preferred target site for retrotransposon integration during evolution.