BackgroundThe offer of prenatal Down’s syndrome screening is part of routine antenatal care in most of Europe; however screening uptake varies significantly across countries. Although a decision to accept or reject screening is a personal choice, it is unlikely that the widely differing uptake rates across countries can be explained by variation in individual values alone.The aim of this study was to compare Down’s syndrome screening policies and programmes in the Netherlands, where uptake is relatively low (<30%) with England and Denmark where uptake is higher (74 and > 90% respectively), in an attempt to explain the observed variation in national uptake rates.MethodsWe used a mixed methods approach with an embedded design: a) documentary analysis and b) expert stakeholder analysis. National central statistical offices and legal documents were studied first to gain insight in demographic characteristics, cultural background, organization and structure of healthcare followed by documentary analysis of primary and secondary sources on relevant documents on DSS policies and programme. To enhance interpretation of these findings we performed in-depth interviews with relevant expert stakeholders.ResultsThere were many similarities in the demographics, healthcare systems, government abortion legislation and Down’s syndrome screening policy across the studied countries. However, the additional cost for Down’s syndrome screening over and above standard antenatal care in the Netherlands and an emphasis on the ‘right not to know’ about screening in this country were identified as potential explanations for the ‘low’ uptake rates of Down’s syndrome screening in the Netherlands. The social context and positive framing of the offer at the service delivery level may play a role in the relatively high uptake rates in Denmark.ConclusionsThis paper makes an important contribution to understanding how macro-level demographic, social and healthcare delivery factors may have an impact on national uptake rates for Down’s syndrome screening. It has suggested a number of policy level and system characteristics that may go some way to explaining the relatively low uptake rates of Down’s syndrome screening in the Netherlands when compared to England and Denmark.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-6963-14-437) contains supplementary material, which is available to authorized users.

Background Studies indicate there is a need to improve the delivery of unexpected news via obstetric ultrasound, but there have been few advances in this area. One factor preventing improvement has been a lack of consensus regarding the appropriate phrases and behaviours which sonographers and ultrasound practitioners should use in these situations. Aims To develop consensus guidelines for unexpected news delivery in Early Pregnancy Unit and Fetal Anomaly Screening Programme NHS settings. Methods A workshop was conducted to identify priorities and reach consensus on areas of contention. Contributors included interdisciplinary healthcare professionals, policy experts, representatives from third-sector organisations, lay experts and academic researchers ( n = 28). Written and verbal feedback was used to draft initial guidance which was then circulated amongst the wider writing group ( n = 39). Revisions were undertaken until consensus was reached. Results Consensus guidelines were developed outlining the behaviours and phrases which should be used during scans where unexpected findings are identified. Specific recommendations included that: honest and clear communication should be prioritised, even with uncertain findings; technical terms should be used, but these should be written down together with their lay interpretations; unless expectant parents use other terminology (e.g. ‘foetus’), the term ‘baby’ should be used as a default, even in early pregnancy; at the initial news disclosure, communication should focus on information provision. Expectant parents should not be asked to make decisions during the scan. Conclusions These recommendations can be used to develop and improve news delivery interventions in obstetric ultrasound settings. The full guidelines can be accessed online as supplemental material and at https://doi.org/10.5518/100/24 .

There are many challenges in the development, implementation and evaluation of healthcare policy. One challenge is understanding how different stakeholders view a particular policy and what impact these views may have during implementation. Q-methodology is one approach that can be used to help policy makers and researchers actively engage with those who are important in policy implementation, and anticipate their responses. Q-methodology combines qualitative and quantitative research methods to systematically explore and describe the range of viewpoints about a topic. Participants are required to rank a set of predefined statements relating to the topic, according to their own viewpoint. Factor analytic techniques then identify people who are like-minded in the way they view the topic and enable areas of consensus and divergence in viewpoint to be clearly defined. This mapping of viewpoints allows those working in policy implementation to anticipate likely barriers and levers in implementing new policies.

BackgroundPeople with learning disabilities (LD) have poor physical and mental health when compared with the general population. They are also likely to find it more difficult than others to describe their symptoms adequately. It is therefore harder for healthcare workers to identify the health needs of those with learning disabilities, with the danger of some problems being left unrecognised. Practice registers record only a proportion of those who are eligible, making it difficult to target improvements in their health care.AimTo test a Read Code search supporting the identification of people with a mild-to-moderate learning disability who are not currently on the learning disability register.Design and settingAn observational study in primary care in West Yorkshire.MethodRead Code searches were created to identify individuals with a learning disability not on the LD register; they were field tested and further refined before testing in general practice.ResultsDiagnostic codes identified small numbers of individuals who should have been on the LD register. Functional and service use codes often created large numbers of false-positive results. The specific descriptive codes ‘Learning difficulties’ and ‘Referral to learning disability team’ needed follow-up review, and then identified some individuals with LD who were not on the register.ConclusionThe Read Code search supported practices to populate their registers and was quick to run and review, making it a viable choice to support register revalidation. However, it did not find large numbers of people eligible for the LD register who were previously unidentified by their practice, suggesting that additional complementary methods are required to support practices to validate their registers.

BackgroundReporting adherence to intervention delivery and uptake is a detailed way of describing what was actually delivered and received, in comparison to what was intended. Measuring and reporting adherence is not routinely done well in complex interventions. The OK Diabetes trial (ISRCTN41897033) aimed to develop and subsequently test the feasibility of implementing a supported self-management intervention in adults with a learning disability and type 2 diabetes. A key study objective was to develop a measure of adherence to the intervention.MethodsWe conducted a systematic review of published literature, extracting data from included papers using a standardised proforma. We undertook a narrative synthesis of papers to determine the form and content of methods for adherence measurement for self-management interventions in this population that had already been developed. We used the framework and data extraction form developed for the review as the basis for an adherence measurement tool that we applied in the OK Diabetes trial.ResultsThe literature review found variability in the quality and content of adherence measurement and reporting, with no standardised approach. We were able to develop an adherence measure based upon the review, and populate it with data collected during the OK Diabetes trial. The adherence tool proved satisfactory for recording and measuring adherence in the trial.ConclusionThere remains a need for a standardised approach to adherence measurement in the field of complex interventions. We have shown that it is possible to produce a simple, feasible measure for assessing adherence in the OK Diabetes trial.Electronic supplementary materialThe online version of this article (doi:10.1186/s12874-016-0236-x) contains supplementary material, which is available to authorized users.