Sarah Cullum

Reporting standards for studies of diagnostic test accuracy in dementia: The STARDdem Initiative

Objective: To provide guidance on standards for reporting studies of diagnostic test accuracy for dementia disorders. Methods: An international consensus process on reporting standards in dementia and cognitive impairment (STARDdem) was established, focusing on studies presenting data from which sensitivity and specificity were reported or could be derived. A working group led the initiative through 4 rounds of consensus work, using a modified Delphi process and culminating in a face-to-face consensus meeting in October 2012. The aim of this process was to agree on how best to supplement the generic standards of the STARD statement to enhance their utility and encourage their use in dementia research. Results: More than 200 comments were received during the wider consultation rounds. The areas at most risk of inadequate reporting were identified and a set of dementia-specific recommendations to supplement the STARD guidance were developed, including better reporting of patient selection, the reference standard used, avoidance of circularity, and reporting of test-retest reliability. Conclusion: STARDdem is an implementation of the STARD statement in which the original checklist is elaborated and supplemented with guidance pertinent to studies of cognitive disorders. Its adoption is expected to increase transparency, enable more effective evaluation of diagnostic tests in Alzheimer disease and dementia, contribute to greater adherence to methodologic standards, and advance the development of Alzheimer biomarkers.

Does depression predict adverse outcomes for older medical inpatients? A prospective cohort study of individuals screened for a trial.

OBJECTIVE to examine the relationship between depressive symptoms and hospital outcomes in an unselected consecutive sample of older medical inpatients. DESIGN a prospective cohort study of individuals screened for a trial. SETTING medical wards of UK district general hospital in rural East Anglia. PARTICIPANTS six hundred and seventeen medical inpatients aged 65+ were randomly selected from consecutive admissions. Baseline measures: 15-item Geriatric Depression Scale (GDS-15), the Abbreviated Mental Test Score (AMTS) and the Cumulative Illness Rating Scale-Geriatric (CIRS-G). MAIN OUTCOME MEASURES length of hospital stay; discharge to a community hospital (for rehabilitation), institutional care or usual place of residence; dying in hospital. RESULTS depressive symptoms are independently associated with an increased likelihood of inpatient death and transfer to a community hospital for rehabilitation, but are not associated with longer length of stay. CONCLUSIONS research evaluating effectiveness of identification and treatment of depression in older medical inpatients should consider including inpatient death and use of rehabilitation services as potential outcomes.

Attitudes and preferences towards screening for dementia: a systematic review of the literature

BackgroundPopulation screening might provide a mechanism to enable early detection of dementia. Yet the potential benefits, harms or acceptability of such a large-scale intervention are not well understood. This research aims to examine the attitudes and preferences of the general public, health care professionals, people with dementia and their carers towards population screening for dementia.MethodsA systematic review of the international literature was undertaken. A search of fifteen bibliographic databases was conducted (up to 12 July 2012; no language restriction) using terms related to dementia, screening, specific screening tools, case finding, and attitudes and preferences; genetic screening and biomarkers were excluded. All study designs were included except opinion-based papers. Included papers were doubly quality assessed and thematically analysed using NVivo.Results29,910 papers were identified of which 29 met the inclusion criteria. We identified seventeen themes relating to the 3 phases of the screening process (pre-, in- and post-screen) – none emerged as more of a facilitator than a barrier to the acceptance of dementia screening. Seven themes emerged in relation to the patient, carer and general population: existing health state; lifestyle and life view; awareness of dementia; role of clinician; communication; benefit; and role of the family. Ten themes emerged in relation to the clinician and healthcare professional: patient’s existing health and comorbidities; awareness of dementia; confidence; duration of patient contact; suitability of screening tool; cost; disclosure; time; treatment and prognosis; and stigma.ConclusionsAs for all screening programmes, screening for dementia raises complex issues around preference and choice for clinicians and the public, and it is unclear what specific factors promote or reduce screening acceptance the most. Overall, the level of evidence is low, few large scale studies have been undertaken and none were conducted in representative samples, all affecting the generalizability of identified themes across healthcare contexts. Nevertheless, our findings suggest that population screening for dementia may not be acceptable to either the general public or health care professionals, and highlight where focused efforts are needed to gain insights into dementia specific issues.

Primary care-led dementia diagnosis services in South Gloucestershire: Themes from people and families living with dementia and health care professionals

Background Primary care-led dementia services are an increasingly common form of service delivery; however, little is known about how these services are understood by their main stakeholders: the patients, family members and health care professionals. A primary care-led dementia service was piloted in the South Gloucestershire area during 2012, in which general practitioners (GPs) led the process of assessment and establishing a diagnosis. Of the 26 surgeries in the area, 11 initially agreed to participate in the pilot, with 12 more joining the project by the end of December 2012. Aim The aim of this study was to provide a qualitative analysis of the experiences of health care professionals, patients and their families, of the new process of assessment, diagnosis and treatment of dementia within a primary care service. Methods Four patients, three care-givers and eight health care professionals were interviewed by peer researchers – all of whom were current care-givers. Interviews were transcribed and analysed using thematic analysis following Braun and Clarke’s model. Data were also gathered about the number of referrals and what happened to these referrals. Results Themes gathered into four main areas: ‘the journey’, ‘what next?’, ‘the benefits and limits of primary care’ and ‘are GPs getting it right’? Conclusions The analysis provided a perspective on the experiences of patients, family members and health care professionals involved in the relocation of part of the memory service, from secondary care (memory clinics) to primary care, being piloted in South Gloucestershire. This identified both practical issues to be improved upon as well as possible barriers.

Exploring attitudes and preferences for dementia screening in Britain: contributions from carers and the general public.

BackgroundDementia is becoming one of the most important emerging public health concerns in a generation. In societal approaches to the mitigation of major disease ‘burden’, population screening can sometimes provide an effective approach to improving detection of disease and outcomes. However the acceptability of a systematic population screening programme for dementia, to the British public, is not known.MethodsA Patient and Public Involvement (PPI) event was organised to give members of the public from the East of England an opportunity to offer their perspectives and to comment on the findings of a systematic literature review looking at attitudes and preferences towards screening for dementia. The event was attended by 36 members of the public and eight national Alzheimer’s Society Research Network volunteers. The morning discussion contained a presentation, which defined population screening for attendees but contained no reference to the findings of the review. In the afternoon, findings of the review were presented and a discussion on the results was facilitated. The discussions were recorded, transcribed and subjected to thematic analysis. The NVivo qualitative data software was used to facilitate this process.ResultsA total of 23 key themes emerged in relation to the carer and general population. The most frequent themes which emerged were the low levels of understanding and awareness around the dementia syndrome; the acceptability and validity of any tests; costs to the National Health Service (NHS); an individual’s existing health status existing health status; financial/profit motive for screening; the inability to change prognosis; and the importance and availability of support.ConclusionsFactors such as personal beliefs, experiences and attitudes to health impact on decisions to be screened for dementia. A number of additional concerns were raised which were not previously identified in the systematic literature review. These were around the economic incentives for screening (profit motive), the provision of social support, and the economic/social impacts of screening programmes. This may reflect cultural differences in health and social care funding models between Britain and other countries where previous research was conducted.

Quality of relationships as predictors of outcomes in people with dementia: a systematic review protocol

Introduction Serious adverse outcomes for people with dementia include institutionalisation, hospitalisation, death, development of behavioural and psychiatric symptoms, and reduced quality of life. The quality of the relationship between the person with dementia and their informal/family carer is thought to affect the risk of these outcomes. However, little is known about which aspects of relationship quality are important, or how they affect outcomes for people with dementia. Methods and analysis This will be a systematic review of the literature. Electronic databases MEDLINE, EMBASE, Web of Science, PsycInfo, the Cochrane Database, ALOIS and OpenGrey will be searched from inception. 2 independent reviewers will screen results for eligibility with standardised criteria. Data will be extracted for relevant studies, and information on the associations between relationship quality and dementia outcomes will be synthesised. Meta-analysis will be performed if possible to calculate pooled effect sizes. Narrative synthesis will be performed if study heterogeneity rules out meta-analysis. Ethics and dissemination Ethical review is not necessary as this review summarises data from previous studies. Results will be disseminated via peer-reviewed publication. Results will also be disseminated to a patient and public involvement group and an expert panel for their views on the findings and implications for future work. Trial registration number CRD42015020518.

Attitudes and preferences towards screening for dementia: a systematic review

Abstract Background Population screening might provide a mechanism to enable early detection of dementia. Yet the potential benefits, harms, or acceptability of such a large-scale intervention are not well understood. We conducted a systematic review of the international scientific literature to examine the attitudes and preferences of the general public, health-care professionals, people with dementia, and their carers towards population screening for dementia. Methods We searched 15 bibliographic databases (up to July 12, 2012, no language restriction) using wide-ranging terms related to dementia, screening, case-finding, and attitudes and preferences towards testing in primary or community care settings; genetic screening and biomarkers were excluded. All study designs were included except opinion-based papers. Included papers were doubly quality assessed and thematically analysed with NVivo (version 9). The review adheres to the PRISMA checklist. Findings 29 910 articles were identified of which 30 met the inclusion criteria. We identified 17 themes relating to the three phases of the screening process (pre-screen, in-screen, and post-screen), none of which emerged as more of a facilitator than a barrier to the acceptance of dementia screening. Seven themes emerged in relation to the patient, carer, and general population: existing health state, lifestyle and life view, awareness of dementia, role of clinician, communication, benefit, and role of the family. Ten themes emerged in relation to the clinician and health-care professional: the patients existing health and comorbidities, awareness of dementia, confidence, duration of patient contact, suitability of screening method, cost, disclosure, time, treatment and prognosis, and stigma. Interpretation As for all screening programmes, screening for dementia raises complex issues around preference and choice for clinicians and the public; the specific factors that promote or reduce screening acceptance the most are unclear. Overall, the level of evidence is low, few large scale studies have been undertaken, but none were conducted in representative samples, all affecting the generalisability of identified themes across health-care contexts. Nevertheless, our findings suggest that population screening for dementia might not be acceptable to either the general public or health-care professionals, and highlight where focused efforts are needed to gain insights into dementia specific issues. Funding This article presents independent research cofunded by the Alzheimers Society (project grant 129) and The BUPA Foundation, and supported by National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care for Cambridgeshire and Peterborough.

Do community-dwelling Māori and Pacific peoples present with dementia at a younger age and at a later stage compared with NZ Europeans?

Ethnicity may affect presentation to clinical services in people with dementia; however, no studies have examined this in Māori or Pacific peoples in New Zealand (NZ). Our objective was to examine the routinely collected clinical data from a memory assessment service in South Auckland to examine the presentation of dementia in the major NZ ethnic groups.