Dataset Information

Dementia research in Ireland: What should we prioritise?

ABSTRACT:

Background

Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers.

Methods

(1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research.

Results

Eight of the top ten research priorities in the survey of professionals ( n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( n=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas.

Conclusions

Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

SUBMITTER: Rogan C

PROVIDER: S-EPMC10638481 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Publications

Dementia research in Ireland: What should we prioritise?

Rogan Carol C Rock Bernadette B Begley Emer E Boland Barry B Brazil Kevin K Diaz-Orueta Unai U Donnelly Sarah S Foley Michael M Foley Tony T Hannigan Caoimhe C Hopper Louise L Keogh Fiona F Lawlor Brian B Leroi Iracema I O'Neill Cora C O'Philbin Laura L Pertl Maria M Trépel Dominic D Kennelly Seán S

HRB open research 20231102

<h4>Background</h4>Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family c ...[more]

PMID: 37954094

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Project description:BackgroundConversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not researchers.MethodsGenerally, to address this gap, and specifically, to inform future research for CLS, we carried out a rapid review of published research priority sets covering LGBTQ+ topics, and an online workshop to prioritise identified themes.ResultsRapid review: results. The rapid review identified 18 LGBTQ+ research priority sets. Some focussed on specific populations such as women or men, younger or older people or people living within families. Five addressed transgender and gender non- conforming populations. All of the research priority sets originated from English-speaking, high and middle-income countries (UK, US, Canada, and Australia), and date from 2016 onwards. Prioritization approaches were wide-ranging from personal commentary to expert workshops and surveys. Participants involved in setting priorities mostly included research academics, health practitioners and advocacy organisations, two studies involved LGBTQ+ public in their process. Research priorities identified in this review were then grouped into themes which were prioritised during the workshop. Workshop: results. For the workshop, participants were recruited using local (Cambridge, UK) LGBTQ+ networks and a national advert to a public involvement in research matching website to take part in an online discussion workshop. Those that took part were offered payment for their time in preparing for the workshop and taking part. Participants personal priorities and experiences contributed to a consensus development process and a final ranked list of seven research themes and participants' experiences of healthcare, mental health advocacy, care homes, caring responsibilities, schools and family units added additional context.ConclusionsFrom the workshop the three research themes prioritised were: healthcare services delivery, prevention, and particular challenges / intersectionality of multiple challenges for people identifying as LGBTQ+. Research themes interconnected in many ways and this was demonstrated by the comments from workshop participants. This paper offers insights into why these priorities were important from participants' perspectives and detail about how to run an inclusive and respectful public involvement research exercise. On a practical level these themes will directly inform future research direction for CLS.

Project description:BackgroundOne in five people living in Ireland is a migrant. Understanding the distinctive health needs of this diverse population is essential to provide evidence-based, culturally sensitive primary care services. The aim of this review is to systematically examine changes in migrant health research in Ireland and to inform research, policy and practice in the field.MethodsTo update a 2017 scoping review of migrant health research in Ireland, we used Arksey and O'Malley's framework, updates by Colquhoun and Peters and the PRISMA-ScR from the Joanna Briggs Institute to search 10 databases covering May 2017 - March 2023. Findings were analysed using the World Health Organisation Strategy and Action Plan for Refugee and Migrant Health 2016-2023, which identifies 9 priority strategic areas (SA). Findings were compared with the 2017 review.Results62 papers were identified. There has been an increase in studies over time from an average of five per year in the previous review to an average of 10 per year in this review. There is growing interest in research about SA1: Collaborative action on migrant health issues and SA2: Advocacy for the right to health of refugees and migrants - evidenced by an increase of 13% in this review. Similarly to 2017, the majority of papers align with three of the nine WHO Strategic Areas; SA3: Addressing the social determinants of health (24%), SA4: Achieving public health preparedness (29%) and SA5: Strengthening health systems (26%). The volume of research on SA6: Communicable diseases (11%) and SA7: Noncommunicable diseases (19%) remains stable however research on SA8: Health screening and assessment (5%) and SA9: Improving health information and communication (2%) remains low.ConclusionsThe increase in the volume of research on migrant health in Ireland is notable. The analysis over time illuminates changes in the focus of research studies. Gaps in research about screening, assessment and health information warrant particular attention. It is also necessary to continue paying attention to areas of recent growth and stagnation for a balanced and comprehensive evidence base. Mobilising resources to continue this increase is needed for evidence-based policy and practice.

Project description:BackgroundPsychotropic medications are commonly prescribed to people with dementia (PwD) for non-cognitive symptoms of dementia (NCSD), but have significant risks. A national audit was performed in acute hospitals in the Republic of Ireland (ROI) to establish baseline practice prior to the launch and implementation of a National Clinical Guideline on the appropriate prescribing of psychotropic medications for NCSD. The objective of this study was to analyse psychotropic prescribing patterns and compare these with international data and with existing (limited) data from a previous audit round.MethodsThe pooled anonymous dataset from the second round of the Irish National Audit of Dementia Care (INAD-2) was analysed. The audit had collected retrospective data from 30 random healthcare records from each of 30 acute hospitals in 2019. Inclusion criteria were a clinical diagnosis of dementia of any type, hospital stay of 72 hours or more, and discharge or death within the audit period. Most hospitals (87%) self-audited their healthcare records, but a random sample of six healthcare records (20%) from each hospital were re-audited by a highly trained healthcare auditor. The audit tool was based on a tool used in the England and Wales National Audit of Dementia audit rounds (Royal College of Psychiatrists), adapted to the Irish healthcare setting and national priorities.ResultsIn total, 893 cases were included, as one hospital could not retrieve 30 cases even within a more prolonged audit period. The sample comprised 55% females and 45% males; the median age was 84 years (interquartile range 79-88 years) and the majority (89.6%) were >75 years of age. Only 52% of healthcare records specified the type of dementia; within these, the most common diagnosis was Alzheimer's disease (45%). Most PwD (83%) were receiving psychotropic medication on admission; 40% were prescribed new or increased psychotropic medication during admission, mainly for medical indications, including end-of-life care and delirium. Anticonvulsants or cognitive enhancers were rarely prescribed for NCSD in hospital. However, new/increased antipsychotic medication was prescribed for NCSD in 11.8-17.6% of the total cohort, while 4.5-7.7% were prescribed a benzodiazepine for anxiety or NCSD. Overall, there was poor documentation of risk/benefit, or of discussion with the patient/family, and apparently inadequate review for efficacy and tolerability. Concurrently, acetylcholinesterase inhibitors appeared to be underused for cognitive impairment in the community.ConclusionThis audit provides baseline data on psychotropic medication prescription for NCSD in Irish hospitals prior to a specific Irish guideline on this topic. Reflecting this, most PwD were receiving psychotropic medications on admission, and many were prescribed new/increased psychotropic medication in hospital, often without evidence of appropriate decision making and prescribing processes.

Project description:BackgroundGroups or institutions funding or conducting systematic reviews in health policy and systems research (HPSR) should prioritise topics according to the needs of policymakers and stakeholders. The aim of this study was to develop and validate a tool to prioritise questions for systematic reviews in HPSR.MethodsWe developed the tool following a four-step approach consisting of (1) the definition of the purpose and scope of tool, (2) item generation and reduction, (3) testing for content and face validity, (4) and pilot testing of the tool. The research team involved international experts in HPSR, systematic review methodology and tool development, led by the Center for Systematic Reviews on Health Policy and Systems Research (SPARK). We followed an inclusive approach in determining the final selection of items to allow customisation to the user's needs.ResultsThe purpose of the SPARK tool was to prioritise questions in HPSR in order to address them in systematic reviews. In the item generation and reduction phase, an extensive literature search yielded 40 relevant articles, which were reviewed by the research team to create a preliminary list of 19 candidate items for inclusion in the tool. As part of testing for content and face validity, input from international experts led to the refining, changing, merging and addition of new items, and to organisation of the tool into two modules. Following pilot testing, we finalised the tool, with 22 items organised in two modules - the first module including 13 items to be rated by policymakers and stakeholders, and the second including 9 items to be rated by systematic review teams. Users can customise the tool to their needs, by omitting items that may not be applicable to their settings. We also developed a user manual that provides guidance on how to use the SPARK tool, along with signaling questions.ConclusionWe have developed and conducted initial validation of the SPARK tool to prioritise questions for systematic reviews in HPSR, along with a user manual. By aligning systematic review production to policy priorities, the tool will help support evidence-informed policymaking and reduce research waste. We invite others to contribute with additional real-life implementation of the tool.

Project description:To better understand the molecular mechanisms underpinning physiological variation in human populations, metabolic phenotyping approaches are increasingly being applied to studies involving hundreds and thousands of biofluid samples. Hyphenated ultra-performance liquid chromatography-mass spectrometry (UPLC-MS) has become a fundamental tool for this purpose. However, the seemingly inevitable need to analyze large studies in multiple analytical batches for UPLC-MS analysis poses a challenge to data quality which has been recognized in the field. Herein, we describe in detail a fit-for-purpose UPLC-MS platform, method set, and sample analysis workflow, capable of sustained analysis on an industrial scale and allowing batch-free operation for large studies. Using complementary reversed-phase chromatography (RPC) and hydrophilic interaction liquid chromatography (HILIC) together with high resolution orthogonal acceleration time-of-flight mass spectrometry (oaTOF-MS), exceptional measurement precision is exemplified with independent epidemiological sample sets of approximately 650 and 1000 participant samples. Evaluation of molecular reference targets in repeated injections of pooled quality control (QC) samples distributed throughout each experiment demonstrates a mean retention time relative standard deviation (RSD) of <0.3% across all assays in both studies and a mean peak area RSD of <15% in the raw data. To more globally assess the quality of the profiling data, untargeted feature extraction was performed followed by data filtration according to feature intensity response to QC sample dilution. Analysis of the remaining features within the repeated QC sample measurements demonstrated median peak area RSD values of <20% for the RPC assays and <25% for the HILIC assays. These values represent the quality of the raw data, as no normalization or feature-specific intensity correction was applied. While the data in each experiment was acquired in a single continuous batch, instances of minor time-dependent intensity drift were observed, highlighting the utility of data correction techniques despite reducing the dependency on them for generating high quality data. These results demonstrate that the platform and methodology presented herein is fit-for-use in large scale metabolic phenotyping studies, challenging the assertion that such screening is inherently limited by batch effects. Details of the pipeline used to generate high quality raw data and mitigate the need for batch correction are provided.

Dataset Information

Dementia research in Ireland: What should we prioritise?

Background

Methods

Results

Conclusions

Publications

Dementia research in Ireland: What should we prioritise?

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