Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses

Background: Neonatal dried blood spots (DBS) present a wealth of data. Currently, many countries discuss DBS storage, management and use. We collected data in the Netherlands on the awareness and views of an unheard stakeholder: mothers (-to-be). Methods: A survey was conducted on an Amsterdam pregnancy fair website in 2011. We included 1,272 women who were pregnant and/or had at least one child years old. A descriptive analysis was used to score the awareness of and views on policies regarding the length of storage and secondary use. Results: 18.9% of mothers (n = 1,272) were aware of all five current DBS screening, storage and use policies. The views were positive for all ten potential specific secondary uses. Most support was given to etiology research, while test development by a company was least supported. Extending the DBS storage beyond the 5-year status quo was approved by 67.8% of the respondents, indefinite storage was approved by 54.7%. Conclusion: Mothers indicate support of several secondary uses and prolonged storage of DBS but report a low awareness of current storage and secondary use policies. Efforts must be made to involve parents as key stakeholders in DBS policies. This could be achieved through a parent-led advisory structure. (C) 2015 The Author(s) Published by S. Karger AG, Base

Prioriteringar i Västerbottens läns landsting 2008 : Del II. Olika tankar om processen

Västerbottens läns landsting genomförde en omfattande prioriteringsprocess under år 2008. Syftet var att ge utrymme för nya medicinska metoder och andra angelägna satsningar (inprioriteringar) genom att begränsa i de lägst prioriterade delarna av utbudet. PrioriteringsCentrums uppgift har varit att göra en kvalitativ analys i syfte att belysa variationer av uppfattningar av arbetet under processens gång. Det huvudsakliga skälet till vårt engagemang har varit att det finns moment i landstingets arbete som är helt nya eller genomförda på ett annat sätt än tidigare prioriteringsarbeten i Sverige. Det finns därför lärdomar att dra från processen i Västerbotten som kan användas av andra huvudmän. Vi har däremot inte utvärderat om landstinget uppnådde sina egna mål, inte heller studerat vilka effekter beslutet fått inom landstingets olika enheter eller för medborgarna. Vår rapport bygger på 41 intervjuer med ett urval av verksamhetsföreträdare, tjänstemän samt politiker. Tre omgångar av intervjuer genomfördes; efter att de vertikala prioriteringarna avslutats, efter att den horisontella granskningen/jämkningen genomförts samt efter att beslut tagits i landstingsstyrelsen. Samtliga nio politiker som deltagit i Prioriteringsforum, med ett undantag, intervjuades. I övrigt skedde urvalet med ambitionen att försöka hitta så många olika uppfattningar som möjligt. Undersökningen syftar med andra ord inte till att kvantifiera uppfattningar om prioriteringsarbetet i Västerbotten. Om detta finns istället att läsa i Västerbottens egen rapport där ett flertal enkätstudier om processen redovisas (Waldau 2009). I rapporten beskrivs deltagarnas uppfattningar utifrån de fyra faser som prioriteringsarbetet bestod av: Fas I – Identifieringsfasen (vertikal prioritering inom basenheter) Fas II – Horisontell granskning/jämkning i grupper Fas III – Prioriteringsforum Fas IV – Politisk beredning och beslut. Vi fann emellertid också en förberedande fas som hade betydelse för utgången av prioriteringsarbetet. Landstinget hade nämligen redan innan prioriteringsprocessen startade förberett arbetet på olika sätt. Dels fanns i landstingets redan tidigare kunskaper och praktiska erfarenheter av bl a medicinskt programarbete. Dels planerades arbetet noggrant. 　 Här ingick två tydliga och centrala inslag: att söka förankra en gemensam problemdefinition som innebar omfördelning av resurser för att skapa utrymme för nyheter1  samt en politisk enighet om att denna omfördelning skulle göras genom öppna och systematiska prioriteringar. Även om en politiskt styrd organisation måste tåla att olika alternativ öppet ställs mot varandra är troligenen politisk uppslutning runt själva processen en viktig komponent i ett prioriteringsarbete. Utöver uppfattningar om dessa faser beskrivs i rapporten också de intervjuades syn på ansvarsfördelningen i prioriteringsarbetet, öppenheten och informationen i arbetet samt processen med inprioriteringar

Pedalling rate affects endurance performancee during high-intensity cycling

General practitioners (GPs) are increasingly called upon to identify patients at risk for hereditary cancers, and their genetic competencies need to be enhanced. This article gives an overview of a research project on how to build effective educational modules on genetics, assessed by randomized controlled trials (RCTs), reflecting the prioritized educational needs of primary care physicians. It also reports on an ongoing study to investigate long-term increase in genetic consultation skills (1-year follow-up) and interest in and satisfaction with a supportive website on genetics among GPs. Three oncogenetics modules were developed: an online Continuing Professional Development (G-eCPD) module, a live genetic CPD module, and a "GP and genetics" website (huisartsengenetica.nl) providing further genetics information applicable in daily practice. Three assessments to evaluate the effectiveness (1-year follow-up) of the oncogenetic modules were designed: 1.An online questionnaire on self-reported genetic competencies and changes in referral behaviour, 2.Referral rates from GPs to clinical genetics centres and 3.Satisfaction questionnaire and visitor count analytics of supportive genetics website. The setting was Primary care in the Netherlands and three groups of study participants were included in the reported studies:. Assessment 1. 168 GPs responded to an email invitation and were randomly assigned to an intervention or control group, evaluating the G-eCPD module (n = 80) or the live module (n = 88). Assessment 2. Referral rates by GPs were requested from the clinical genetics centres, in the northern and southern parts of the Netherlands (Amsterdam and Maastricht), for the two years before (2010 [n = 2510] and 2011 [n = 2940]) and the year after (2012 [n = 2875]) launch of the oncogenetics CPD modules and the website. Assessment 3. Participants of the website evaluation were all recruited online. When they visited the website during the month of February 2013, a pop-up invitation came up. Of the 1350 unique visitors that month, only 38 completed the online questionnaire. Main outcomes measure showed long-term (self-reported) genetic consultation skills (i.e. increased genetics awareness and referrals to clinical genetics centres) among GPs who participated in the oncogenetic training course, and interest in and satisfaction with the supportive website. 42 GPs (52%) who previously participated in the G-eCPD evaluation study and 50 GPs (57%) who participated in the live training programme responded to the online questionnaire on long-term effects of educational outcome. Previous RCTs showed that the genetics CPD modules achieved sustained improvement of oncogenetic knowledge and consultation skills (3-months follow-up). Participants of these RCTs reported being more aware of genetic problems long term; this was reported by 29 GPs (69%) and 46 GPs (92%) participating in the G-eCPD and live module evaluation studies, respectively (Chisquare test, p<0.005). One year later, 68% of the respondents attending the live training reported that they more frequently referred patients to the clinical genetics centres, compared to 29% of those who attended the online oncogenetics training (Chisquare test, p<0.0005). However, the clinical genetics centres reported no significant change in referral numbers one year after the training. Website visitor numbers increased, as did satisfaction, reflected in a 7.7 and 8.1 (out of 10) global rating of the website (by G-eCPD and live module participants, respectively). The page most often consulted was "family tree drawing". Self-perceived genetic consultation skills increased long-term and GPs were interested in and satisfied with the supportive website. Further studies are necessary to see whether the oncogenetics CPD modules result in more efficient referral. The results presented suggest we have provided a flexible and effective framework to meet the need for effective educational programmes for non-geneticist healthcare providers, enabling improvement of genetic medical care