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To learn from two jurisdictions with mature genomics-informed nursing policy infrastructure—the United States (US) and the United Kingdom (UK)—to inform policy development for genomics-informed oncology nursing practice and education in Canada.
Comparative document and policy analysis drawing on the 3i + E framework.
We drew on the principles of a rapid review and identified academic literature, grey literature and nursing policy documents through a systematic search of two databases, a website search of national genomics nursing and oncology nursing organizations in the US and UK, and recommendations from subject matter experts on an international advisory committee. A total of 94 documents informed our analysis.
We found several types of policy documents guiding genomics-informed nursing practice and education in the US and UK. These included position statements, policy advocacy briefs, competencies, scope and standards of practice and education and curriculum frameworks. Examples of drivers that influenced policy development included nurses' values in aligning with evidence and meeting public expectations, strong nurse leaders, policy networks and shifting healthcare and policy landscapes.
Our analysis of nursing policy infrastructure in the US and UK provides a framework to guide policy recommendations to accelerate the integration of genomics into Canadian oncology nursing practice and education.
Findings can assist Canadian oncology nurses in developing nursing policy infrastructure that supports full participation in safe and equitable genomics-informed oncology nursing practice and education within an interprofessional context.
This study informs Canadian policy development for genomics-informed oncology nursing education and practice. The experiences of other countries demonstrate that change is incremental, and investment from strong advocates and collaborators can accelerate the integration of genomics into nursing. Though this research focuses on oncology nursing, it may also inform other nursing practice contexts influenced by genomics.
Many people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives’ sleep disturbance leads to interruption of their sleep, low mood and breakdown of care. Our team developed and delivered DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives), a multimodal non-pharmacological intervention, showing it to be feasible and acceptable. The aim of this randomised controlled trial is to establish whether DREAMS START is clinically cost-effective in reducing sleep disturbances in people living with dementia living at home compared with usual care.
We will recruit 370 participant dyads (people living with dementia and family carers) from memory services, community mental health teams and the Join Dementia Research Website in England. Those meeting inclusion criteria will be randomised (1:1) either to DREAMS START or to usual treatment. DREAMS START is a six-session (1 hour/session), manualised intervention delivered every 1–2 weeks by supervised, non-clinically trained graduates. Outcomes will be collected at baseline, 4 months and 8 months with the primary outcome being the Sleep Disorders Inventory score at 8 months. Secondary outcomes for the person with dementia (all proxy) include quality of life, daytime sleepiness, neuropsychiatric symptoms and cost-effectiveness. Secondary outcomes for the family carer include quality of life, sleep disturbance, mood, burden and service use and caring/work activity. Analyses will be intention-to-treat and we will conduct a process evaluation.
London—Camden & Kings Cross Ethics Committee (20/LO/0894) approved the study. We will disseminate our findings in high-impact peer-reviewed journals and at national and international conferences. This research has the potential to improve sleep and quality of life for people living with dementia and their carers, in a feasible and scalable intervention.
by Dzifa Dordunoo, Jacqueline Limoges, Patrick Chiu, Rebecca Puddester, Lindsay Carlsson, April Pike
ObjectiveThe objective of this scoping review is to map the available evidence on strategies that nurses can use to facilitate genomics-informed healthcare to address health disparities.
IntroductionAdvancements in genomics over the last two decades have led to an increase in the delivery of genomics-informed health care. Although the integration of genomics into health care services continues to enhance patient outcomes, access to genomic technologies is not equitable, exacerbating existing health disparities amongst certain populations. As the largest portion of the health workforce, nurses play a critical role in the delivery of equitable genomics-informed care. However, little is known about how nurses can help address health disparities within the context of genomics-informed health care. A review of the literature will provide the necessary foundation to identify promising practices, policy, and knowledge gaps for further areas of inquiry.
Inclusion criteriaWe will include papers that explore strategies that nurses can undertake to facilitate genomics-informed care to address health disparities.
MethodsThis review will be conducted using JBI methodology for scoping reviews. We will search electronic databases including MEDLINE (OVID), EMBASE, Cochrane Library, PsychInfo, and CINAHL for quantitative and qualitative studies, systematic reviews and grey literature. Theses, books, and unavailable full-text papers will be excluded. The search will be limited to papers from 2013 and beyond. Two reviewers will screen titles and abstracts followed by full-text and disagreements will be resolved by a third reviewer. We will use a data extraction tool using Microsoft Excel and analyse data using descriptive statistics and conventional content analysis. Findings will be presented in the form of evidence tables and a narrative summary. We will report findings using the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).
DiscussionGenomics will continue to transform all aspects of health care across the wellness continuum from prevention, assessment, diagnosis, management, treatment, and palliative care. The identification of nursing strategies to address health disparities will build the foundation for policy and practice to ensure that the integration of genomic technologies benefits everyone.
To investigate whether intravenous immunoglobulin (IVIG) improves neurological outcomes in children with encephalitis when administered early in the illness.
Phase 3b multicentre, double-blind, randomised placebo-controlled trial.
Twenty-one hospitals in the UK.
Children aged 6 months to 16 years with a diagnosis of acute or subacute encephalitis, with a planned sample size of 308.
Two doses (1 g/kg/dose) of either IVIG or matching placebo given 24–36 hours apart, in addition to standard treatment.
The primary outcome was a ‘good recovery’ at 12 months after randomisation, defined as a score of≤2 on the Paediatric Glasgow Outcome Score Extended.
The secondary outcomes were clinical, neurological, neuroimaging and neuropsychological results, identification of the proportion of children with immune-mediated encephalitis, and IVIG safety data.
18 participants were recruited from 12 hospitals and randomised to receive either IVIG (n=10) or placebo (n=8) between 23 December 2015 and 26 September 2017. The study was terminated early following withdrawal of funding due to slower than anticipated recruitment, and therefore did not reach the predetermined sample size required to achieve the primary study objective; thus, the results are descriptive. At 12 months after randomisation, 9 of the 18 participants (IVIG n=5/10 (50%), placebo n=4/8 (50%)) made a good recovery and 5 participants (IVIG n=3/10 (30%), placebo n=2/8 (25%)) made a poor recovery. Three participants (IVIG n=1/10 (10%), placebo n=2/8 (25%)) had a new diagnosis of epilepsy during the study period. Two participants were found to have specific autoantibodies associated with autoimmune encephalitis. No serious adverse events were reported in participants receiving IVIG.
The IgNiTE (ImmunoglobuliN in the Treatment of Encephalitis) study findings support existing evidence of poor neurological outcomes in children with encephalitis. However, the study was halted prematurely and was therefore underpowered to evaluate the effect of early IVIG treatment compared with placebo in childhood encephalitis.
Clinical Trials.gov NCT02308982; ICRCTN registry
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