An intervention for people with learning disabilities and epilepsy

Date of Acceptance: 09/01/2015Epilepsy is relatively common in people with learning disabilities, and can be complex and refractory to treatment, with negative effects on quality of life and service costs. This article describes a randomised controlled feasibility trial, called Wordless Intervention for Epilepsy in Learning Disabilities, under way at Hertfordshire Partnership University NHS Foundation Trust. Recruitment of people with learning disabilities and epilepsy to the trial has been affected by logistical issues, such as difficulties in identifying potential patients and contacting carers. However, public and patient involvement has improved study design and management, and has helped maximise recruitment. Should the present study confirm feasibility, a full-scale randomised controlled trial will address the effects of the Books Beyond Words title Getting on With Epilepsy as an intervention for people with learning disabilities and epilepsy.Peer reviewe

Amniocentesis dilemma : needs assessment, development and field-testing of a theory-based decision support intervention

Background: Amniocentesis is the most common prenatal diagnostic procedure undertaken in the United Kingdom, usually performed after 15 completed weeks of pregnancy. The procedure is reported to have a 1 % risk of miscarriage and the results of the chromosome tests may require further decision making about whether to continue with the pregnancy. Deciding about amniocentesis is a complex and emotionally charged decision, often undertaken in a short period of time and, under current practice, with little systematic decision support. Decision Support Interventions, also known as Patient Decision Aids, have been developed to help individuals leam about the features and implications of their treatment or screening options while improving communication with their health professionals. Those interventions are specifically targeted at preference-sensitive decisions with significant harms, benefits and uncertainty, where no screening or treatment option is objectively better than the other. This thesis proposed to assess information and decision support needs of pregnant women undertaking amniocentesis testing and to design and field-test, in collaboration with pregnant women and health professionals, a theory-based Decision Support Intervention for amniocentesis testing (amnioDex). Methods: A multi-method approach was adopted that included a systematic review, theoretical review, and qualitative analysis to develop and pilot a theory-based intervention intended for pregnant women facing a decision to undertake amniocentesis testing. The content areas and themes to be covered in the intervention were determined by a literature review and needs assessment conducted with pregnant women and health professionals. The prototype development of amnioDex (amniocentesis decision explorer) was guided by theory and included heuristic-based deliberation tools. Incremental prototypes of amnioDex and embedded deliberation tools were field-tested with lay users, health professionals and pregnant women facing a decision to undertake amniocentesis, using the "think-aloud" technique. Results: The amnioDex intervention was developed over a period of two years and field-tested for eight months. Conclusion: Findings from this thesis showed that it was feasible to use theory to generate a Decision Support Intervention acceptable to women facing amniocentesis testing and to health professionals counselling them. Future research needs to evaluate the effectiveness of amnioDex in a randomised controlled trial and to examine methods for effectively transferring theory into practice.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Amniocentesis dilemma : Needs assessment, development and field-testing of a theory-based decision support intervention

Background: Amniocentesis is the most common prenatal diagnostic procedure undertaken in the United Kingdom, usually performed after 15 completed weeks of pregnancy. The procedure is reported to have a 1 % risk of miscarriage and the results of the chromosome tests may require further decision making about whether to continue with the pregnancy. Deciding about amniocentesis is a complex and emotionally charged decision, often undertaken in a short period of time and, under current practice, with little systematic decision support. Decision Support Interventions, also known as Patient Decision Aids, have been developed to help individuals leam about the features and implications of their treatment or screening options while improving communication with their health professionals. Those interventions are specifically targeted at preference-sensitive decisions with significant harms, benefits and uncertainty, where no screening or treatment option is objectively better than the other. This thesis proposed to assess information and decision support needs of pregnant women undertaking amniocentesis testing and to design and field-test, in collaboration with pregnant women and health professionals, a theory-based Decision Support Intervention for amniocentesis testing (amnioDex). Methods: A multi-method approach was adopted that included a systematic review, theoretical review, and qualitative analysis to develop and pilot a theory-based intervention intended for pregnant women facing a decision to undertake amniocentesis testing. The content areas and themes to be covered in the intervention were determined by a literature review and needs assessment conducted with pregnant women and health professionals. The prototype development of amnioDex (amniocentesis decision explorer) was guided by theory and included heuristic-based deliberation tools. Incremental prototypes of amnioDex and embedded deliberation tools were field-tested with lay users, health professionals and pregnant women facing a decision to undertake amniocentesis, using the 'think-aloud' technique. Results: The amnioDex intervention was developed over a period of two years and field-tested for eight months. Conclusion: Findings from this thesis showed that it was feasible to use theory to generate a Decision Support Intervention acceptable to women facing amniocentesis testing and to health professionals counselling them. Future research needs to evaluate the effectiveness of amnioDex in a randomised controlled trial and to examine methods for effectively transferring theory into practice

Self-management interventions for epilepsy in people with intellectual disabilities: A Scoping Review

This document is the Accepted Manuscript of an article accepted for publication in SEIZURE: European Journal of Epilepsy (2016), , http://dx.doi.org/10.1016/j.seizure.2016.06.022.Purpose People with intellectual disabilities (ID) experience higher incidences of chronic health conditions, poorer health outcomes, and increased risk of premature death. Epilepsy is 20 times more common in people with ID than in the general population. It tends to be more difficult to diagnose, more severe, and more difficult to treat. Improving epilepsy self-management in this group is advocated in guidelines for best practice. However, few self-management interventions exist, and a robust examination of their effectiveness is missing. Our aim was to identify existing self-management interventions for epilepsy in people with ID and to analyze their impact. Methods A scoping review using Arksey and O’Malley's framework was conducted. Medline, EMBASE, CINAHL, PsycInfo, OpenSIGLE, the Cochrane Database of Systematic Reviews, and Web of Science were searched from inception until June 2015. Using a piloted charting tool, selected articles were thematically analyzed. Results An initial search identified 570 articles, of which five met the inclusion criteria. Pilot and randomized controlled feasibility study findings suggest that self-management interventions targeted at people with ID are acceptable to this population, improve epilepsy-related knowledge, improve seizure frequency, and show potential to improve quality of life. A randomised controlled trial of a self-management intervention is currently underway. Conclusion Studies evaluating self-management interventions for people with epilepsy and ID are sparse. Our findings demonstrate the potential for self-management interventions to improve outcomes in this population. Controlled studies with comparable measures and longer follow-ups are needed to rigorously assess the impact of self-management interventions on this patient population.Peer reviewe

Wordless Intervention for Epilepsy in Learning Disabilities (WIELD): Study Protocol for a Randomized Controlled Feasibility Trial

Epilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images to help people with learning disabilities manage their condition and improve quality of life. Our aim is to conduct a randomized controlled feasibility trial exploring key methodological, design and acceptability issues, in order to subsequently undertake a large-scale randomized controlled trial of the Books Beyond Words booklet for epilepsy

Can shared decision making reduce medical malpractice litigation? : A systematic review

© 2015 Durand et al.; licensee BioMed Central. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise statedTo explore the likely influence and impact of shared decision-making on medical malpractice litigation and patients’ intentions to initiate litigation. We included all observational, interventional and qualitative studies published in all languages, which assessed the effect or likely influence of shared decision-making or shared decision-making interventions on medical malpractice litigation or on patients’ intentions to litigate. The following databases were searched from inception until January 2014: CINAHL, Cochrane Register of Controlled Trials, Cochrane Database of Systematic Reviews, EMBASE, HMIC, Lexis library, MEDLINE, NHS Economic Evaluation Database, Open SIGLE, PsycINFO and Web of Knowledge. We also hand searched reference lists of included studies and contacted experts in the field. Downs & Black quality assessment checklist, the Critical Appraisal Skill Programme qualitative tool, and the Critical Appraisal Guidelines for single case study research were used to assess the quality of included studiePeer reviewedFinal Published versio

Trustworthy Patient Decision Aids: a Qualitative Analysis Addressing the Risk of Competing Interests

OBJECTIVE: Our aim in this study was to examine the competing interest policies and procedures of organisations who develop and maintain patient decision aids. DESIGN: Descriptive and thematic analysis of data collected from a cross-sectional survey of patient decision aid developer\u27s competing interest policies and disclosure forms. RESULTS: We contacted 25 organisations likely to meet the inclusion criteria. 12 eligible organisations provided data. 11 organisations did not reply and 2 declined to participate. Most patient decision aid developers recognise the need to consider the issue of competing interests. Assessment processes vary widely and, for the most part, are insufficiently robust to minimise the risk of competing interests. Only half of the 12 organisations had competing interest policies. Some considered disclosure to be sufficient, while others imposed differing levels of exclusion. CONCLUSIONS: Patient decision aid developers do not have a consistent approach to managing competing interests. Some have developed policies and procedures, while others pay no attention to the issue. As is the case for clinical practice guidelines, increasing attention will need to be given to how the competing interests of contributors of evidence-based publications may influence materials, especially if they are designed for patient use

Transforming growth factor beta-1 decreases the yield of the second meiotic division of rat pachytene spermatocytes in vitro

BACKGROUND: TGF beta and its receptors are present in both germ cells and somatic cells of the male gonad. However, knock-out strategies for studying spermatogenesis regulation by TGF beta have been disappointing since TGF beta-or TGF beta receptor-null mice do not survive longer than a few weeks. METHODS: In the present study, we addressed the role of TGF beta-1 on the completion of meiosis by rat pachytene spermatocytes (PS) cocultured with Sertoli cells. Identification and counting of meiotic cells were performed by cytology and cytometry. RESULTS: Under our culture conditions, some PS differentiated into round spermatids (RS). When TGF beta-1 was added to the culture medium, neither the number of PS or of secondary spermatocytes nor the half-life of RS was modified by the factor. By contrast, the number of RS and the amount of TP1 mRNA were lower in TGF beta-1-treated cultures than in control cultures. Very few metaphase I cells were ever observed both in control and TGF beta-1-treated wells. Higher numbers of metaphase II were present and their number was enhanced by TGF beta-1 treatment. A TGF beta-like bioactivity was detected in control culture media, the concentration of which increased with the time of culture. CONCLUSION: These results indicate that TGF beta-1 did not change greatly, if any, the yield of the first meiotic division but likely enhanced a bottleneck at the level of metaphase II. Taken together, our results suggest strongly that TGF beta participates in an auto/paracrine pathway of regulation of the meiotic differentiation of rat spermatocytes