Background: Everyday exposure to radiofrequency electromagnetic fields (RF-EMF) emitted from wireless devices such as mobile phones and base stations, radio and television transmitters is ubiquitous. Some people attribute non-specific physical symptoms (NSPS) such as headache and fatigue to exposure to RF-EMF. Most previous laboratory studies or studies that analyzed populations at a group level did not find evidence of an association between RF-EMF exposure and NSPS. Objectives: We explored the association between exposure to RF-EMF in daily life and the occurrence of NSPS in individual self-declared electro hypersensitive persons using body worn exposimeters and electronic diaries. Methods: We selected seven individuals who attributed their NSPS to RF-EMF exposure. The level of and variability in personal RF-EMF exposure and NSPS were determined during a three-week period. Data were analyzed using timeseries analysis in which exposure as measured and recorded in the diary was correlated with NSPS. Results: We found statistically significant correlations between perceived and actual exposure to wireless internet (WiFi - rate of change and number of peaks above threshold) and base stations for mobile telecommunications (GSM+UMTS downlink, rate of change) and NSPS scores in four of the seven participants. In two persons a higher EMF exposure was associated with higher symptom scores, and in two other persons it was associated with lower scores. Remarkably, we found no significant correlations between NSPS and timeweighted average power density, the most commonly used exposure metric. Conclusions: RF-EMFexposure was associated either positively or negatively with NSP Sinsome but not all of the selected self-declared electro hypersensitive persons. https://doi.org/10.1016/j.envint.2018.08.064
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BackgroundSpecialist palliative care teams are consulted during hospital admission for advice on complex palliative care. These consultations need to be timely to prevent symptom burden and maintain quality of life. Insight into specialist palliative care teams may help improve the outcomes of palliative care.MethodsIn this retrospective observational study, we analyzed qualitative and quantitative data of palliative care consultations in a six-month period (2017 or 2018) in four general hospitals in the northwestern part of the Netherlands. Data were obtained from electronic medical records.ResultsWe extracted data from 336 consultations. The most common diagnoses were cancer (54.8%) and organ failure (26.8%). The estimated life expectancy was less than three months for 52.3% of all patients. Within two weeks after consultation, 53.2% of the patients died, and the median time until death was 11 days (range 191) after consultation. Most patients died in hospital (49.4%) but only 7.5% preferred to die in hospital. Consultations were mostly requested for advance care planning (31.6%). End-of-life preferences focused on last wishes and maintaining quality of life.ConclusionThis study provides detailed insight into consultations of palliative care teams and shows that even though most palliative care consultations were requested for advance care planning, consultations focus on end-of-life care and are more crisis-oriented than prevention-oriented. Death often occurs too quickly after consultation for end-of-life preferences to be met and these preferences tend to focus on dying. Educating healthcare professionals on when to initiate advance care planning would promote a more prevention-oriented approach. Defining factors that indicate the need for timely palliative care team consultation and advance care planning could help timely identification and consultation.
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Intradialytic hypotension (IDH) is considered to be a frequent complication of hemodialysis (HD) and is associated with symptom burden, increased incidence of access failure, cardiovascular events, and higher mortality. This systematic literature review aims to analyse studies that investigated the prevalence of IDH. A complicating factor herein is that many different definitions of IDH are used in literature.Methods: A systematic literature search from databases, Medline, Cinahl, EMBASE, and the Cochrane library to identify studies reporting on the actual prevalence of IDH was conducted. Studies were categorized by the type of definition used for the prevalence of IDH. A meta-analysis of the prevalence of IDH was performed.Results: In a meta-analysis comprising 4 studies including 1,694 patients and 4 studies including 13,189 patients, the prevalence of HD sessions complicated by IDH was 10.1 and 11.6% for the European Best Practice Guideline (EBPG) definition and the Nadir <90 definition, respectively. The proportion of patients with frequent IDH could not reliably be established because of the wide range in cutoff values that were used to identify patients with frequent IDH. There was a large variety in the prevalence of symptoms and interventions. Major risk factors associated with IDH across studies were diabetes, a higher interdialytic weight gain, female gender, and lower body weight.Conclusion: Our meta-analysis suggests that the prevalence of IDH is lower than 12% for both the EBPG and the Nadir <90 definition which is much lower than stated in most reviews.
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Huntington’s disease (HD) and various spinocerebellar ataxias (SCA) are autosomal dominantly inherited neurodegenerative disorders caused by a CAG repeat expansion in the disease-related gene1. The impact of HD and SCA on families and individuals is enormous and far reaching, as patients typically display first symptoms during midlife. HD is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia. SCAs are mainly characterized by ataxia but also other symptoms including cognitive deficits, similarly affecting quality of life and leading to disability. These problems worsen as the disease progresses and affected individuals are no longer able to work, drive, or care for themselves. It places an enormous burden on their family and caregivers, and patients will require intensive nursing home care when disease progresses, and lifespan is reduced. Although the clinical and pathological phenotypes are distinct for each CAG repeat expansion disorder, it is thought that similar molecular mechanisms underlie the effect of expanded CAG repeats in different genes. The predicted Age of Onset (AO) for both HD, SCA1 and SCA3 (and 5 other CAG-repeat diseases) is based on the polyQ expansion, but the CAG/polyQ determines the AO only for 50% (see figure below). A large variety on AO is observed, especially for the most common range between 40 and 50 repeats11,12. Large differences in onset, especially in the range 40-50 CAGs not only imply that current individual predictions for AO are imprecise (affecting important life decisions that patients need to make and also hampering assessment of potential onset-delaying intervention) but also do offer optimism that (patient-related) factors exist that can delay the onset of disease.To address both items, we need to generate a better model, based on patient-derived cells that generates parameters that not only mirror the CAG-repeat length dependency of these diseases, but that also better predicts inter-patient variations in disease susceptibility and effectiveness of interventions. Hereto, we will use a staggered project design as explained in 5.1, in which we first will determine which cellular and molecular determinants (referred to as landscapes) in isogenic iPSC models are associated with increased CAG repeat lengths using deep-learning algorithms (DLA) (WP1). Hereto, we will use a well characterized control cell line in which we modify the CAG repeat length in the endogenous ataxin-1, Ataxin-3 and Huntingtin gene from wildtype Q repeats to intermediate to adult onset and juvenile polyQ repeats. We will next expand the model with cells from the 3 (SCA1, SCA3, and HD) existing and new cohorts of early-onset, adult-onset and late-onset/intermediate repeat patients for which, besides accurate AO information, also clinical parameters (MRI scans, liquor markers etc) will be (made) available. This will be used for validation and to fine-tune the molecular landscapes (again using DLA) towards the best prediction of individual patient related clinical markers and AO (WP3). The same models and (most relevant) landscapes will also be used for evaluations of novel mutant protein lowering strategies as will emerge from WP4.This overall development process of landscape prediction is an iterative process that involves (a) data processing (WP5) (b) unsupervised data exploration and dimensionality reduction to find patterns in data and create “labels” for similarity and (c) development of data supervised Deep Learning (DL) models for landscape prediction based on the labels from previous step. Each iteration starts with data that is generated and deployed according to FAIR principles, and the developed deep learning system will be instrumental to connect these WPs. Insights in algorithm sensitivity from the predictive models will form the basis for discussion with field experts on the distinction and phenotypic consequences. While full development of accurate diagnostics might go beyond the timespan of the 5 year project, ideally our final landscapes can be used for new genetic counselling: when somebody is positive for the gene, can we use his/her cells, feed it into the generated cell-based model and better predict the AO and severity? While this will answer questions from clinicians and patient communities, it will also generate new ones, which is why we will study the ethical implications of such improved diagnostics in advance (WP6).
Dit project exploreert de potentie van een eHealth-gebaseerde hoofdpijnapp ‘Hoofdpunt’ voor fysiotherapeuten en hoofdpijnverpleegkundigen die patiënten met hardnekkige hoofdpijn of ernstige migraine ondersteunen bij het (weer) optimaal kunnen functioneren in hun dagelijkse leven. Het concept is gebaseerd op een recent ontwikkelde interactieve app die fysiotherapeuten ondersteunt bij blended coaching van rugpijnpatiënten naar eigen regie over leven met lage rugpijn. De inhoud van deze app is gestoeld op een cognitieve gedragstherapeutische benadering (de Acceptance and Commitment Therapy: ACT) die de persoonlijke situatie, wensen en klachten van de patiënten als uitgangspunt neemt bij blended coaching naar eigen regie. Eerstelijns fysiotherapeuten en hoofdpijnverpleegkundigen van hoofdpijncentra willen het potentieel van bovenstaand concept exploreren voor hun ondersteuning van patiënten met hardnekkige hoofdpijn of ernstige migraine. Een optimale benutting van app-technologie in combinatie met het ACT-concept draagt naar verwachting bij aan hun mogelijkheden om patiënten inzicht te verschaffen in factoren die de ‘uitlokkers’ van hoofdpijn en de hevigheid van symptomen beïnvloeden. Het belang daarvan is gelegen in de forse aanslag van ernstige hoofdpijn op de kwaliteit van leven. Migraine staat bijvoorbeeld op de tweede plaats van de Global Burden of Disease Study. De met hoofdpijn en migraine gemoeide kosten zijn hoog als gevolg van veelvuldig medicatiegebruik en hoog ziekteverzuim. Inzicht in beïnvloedende factoren stelt patiënten in staat om eigen regie en verantwoordelijkheid te nemen over het dagelijkse functioneren en kan aanvallen van hoofdpijn/migraine voorkomen en/of verzachten. De verwachting is dat medicatiegebruik en ziekteverzuim daardoor zullen afnemen. In dit project exploreren wij aan de hand van actieonderzoek de wensen en mogelijkheden van de ‘Hoofdpunt-app’ bij zorgprofessionals en patiënten. Het project is een voorbereiding op de evaluatie van de doelmatigheid van deze ondersteuning bij hoofdpijninterventie.
