UK National Screening Committee. Screening for Dementia. 26 November 2014

Transcription

1 UK National Screening Committee Screening for Dementia 26 November 2014 Aim 1. This document provides background on the item addressing screening for dementia Current recommendation 2. The 2010 review of screening for Alzheimer s disease concluded that systematic population screening is not recommended. Review 3. The scope of the current review has expanded on the 2010 Alzheimer s review by including all types of dementia and focused on the use of cognitive assessment tools for screening. Both of these reviews were undertaken by Solutions for Public Health. 4. Interest in screening for all types of dementia (i.e. not only Alzheimer s) was stimulated following a request from the Department of Health and through discussion with the National Clinical Director for Dementia and other stakeholders. 5. The conclusion of the current review is that population screening for dementia should not be recommended. The key reasons relate to the test for dementia. The best tests currently use cognitive assessment tools (essentially questionnaires that test a person s memory and ability to understand where they are and what s happening). : Studies of cognitive assessment tests show that they are not sufficiently accurate to be used in primary care or community settings. This means that the tests swill tell some people with dementia that they are well and miss others who do have dementia. The positive predictive value of cognitive assessment tools in people under 85 is poor. That means that if a person under 85 has a positive screening result they are still more likely not to have dementia the result will be many people being unnecessarily worried.

2 6. It is possible that mild cognitive impairment is an early stage in the development of dementia. However just how many people go from having mild cognitive impairment to actually having dementia and how many people improve and return to normal is as yet unknown.. Further research is needed following-up individuals beyond ten years to see if dementia develops. 7. There is inconsistent and inconclusive evidence to show how effective proposed treatments are for people with mild cognitive impairment / dementia, and their Carers. Consultation 8. A four month consultation was hosted on the UK NSC website, and the following organisations were contacted directly: Alzheimer s Society, Alzheimer s Research Trust, Association of British Neurologists, British Psychological Society, Royal College of General Practitioners, Royal College of Physicians, and Royal College of Psychiatrists. 9. Responses were received from the British Geriatrics Society, Alzheimer s Research UK, and Cambridge Institute of Public Health. These are attached for reference. The responses confirmed the conclusions of the review. The Cambridge Institute of Public Health made a number of suggestions regarding amendments to the detail of the review. These have been considered by the reviewer and accommodated where the evidence allows. See Annexe A for a full list of the consultation comments.v Recommendation 10. The committee is asked to approve the following recommendation: The UK NSC does not recommend a systematic population screening programme for Dementia using cognitive assessment tools Cognitive assessment tools are insufficiently reliable for use in large scale screening programmes and there is insufficient evidence on the benefit of interventions to demonstrate that early treatment leads to improved outcomes from screening.

3 Annexe A Consultation Comments Name: Dementia and related disorders Special Interest Group (SIG), British Geriatrics Society. : Organisation (if appropriate): British Geriatrics Society Role: Chair of SIG Do you consent to your name being published on the UK NSC website alongside your response? Yes X No Section and / or page number Introduction Text or issue to which comments relate Comment The scope of the consultation needs to be clarified. It is presumed that the document refers to screening of asymptomatic individuals within the community who live independently. It should therefore be stated that clinicians (mostly GP s) who encounter individuals showing the symptoms of dementia and /or delirium (even if this is not the presenting complaint of that consultation) should continue to assess and refer that individual onto the local dementia diagnostic pathway at the

4 earliest possible opportunity. Comment needs to be made regarding the case for screening in the general hospital population and the British Geriatrics Society suggests that a similar screening consultation is undertaken for this high risk population. Introduction It is unclear as to whether the views of people with dementia and their carers have a voice in this consultation. This should be clarified. Implications for research Lack of evidence is cited as an argument against screening. Sometimes we are inclined to interpret this as negative evidence when in fact it means that the research needed to show benefit is so fraught with methodological difficulty that it has not been carried out. Any benefit gained from a screening programme can be measured from the point of view of not only the person with dementia but also caregivers and care systems ie dementia is different from less complex disease entities because of the wide-ranging resulting manifestations of the condition beyond the primary individual concerned. Design of endpoints in trials that capture this is also methodologically difficult. Research to develop innovative new methodologies such as the MRC framework for the evaluation of complex

5 interventions need to be encouraged in order to measure the true positive effects in the complex socio-clinical scenario that is presented by those with Dementia.

6

7

8 Name: Louise Lafortune Organisation (if appropriate): Cambridge Institute of Public Health, University of Cambridge Role: Senior Research Associate Do you consent to your name being published on the UK NSC website alongside your response? Yes No Section and / or page number Point 19; p. 6 Text or issue to which comments relate Potential association between risk factors and dementia (Evidence) Comment Please use a new row for each comment and add extra rows as required. We conducted a scoping review of the literature for the National Institute for Health and Care Excellence looking at the association between behavioural risk factors in mid-life and successful ageing, the primary prevention or delay of disability, dementia, frailty, and non-communicable chronic conditions. A copy of the report is available here (See Review 2):

9 We recognise it might not be possible to refer to all this evidence in the policy document but it would be relevant to refer to the report prepared for NICE and, by February 2015, the new NICE guidance. Here we summarise some of the findings relevant to the prevention of dementia: Overall, the quality of studies is good (most studies were rated as high or moderate quality) and most of them are directly or partially applicable to the UK context. For physical activity and inactivity, 45 reports were included. The available data covers different levels and intensity of PA and a few studies report specific types of activity (e.g. walking, active commuting). There is consistent evidence that midlife physical activity has a beneficial effect on later life healthy ageing, dementia, disability and other chronic disease outcomes. Beneficial effects were reported for both men and women. For diet, 48 studies were included. Evidence was found

10 covering midlife dietary patterns and consumption of dietary components, such macronutrients and for specific foods. There is some consistent evidence (but from a limited number of studies) that a healthy diet in general (studies included e.g. ADA diets) or Mediterranean diet, and fruit and vegetables have beneficial effects on late life outcomes. There is also consistent evidence (again from a limited number of studies) that higher consumption of saturated fat or processed and red meat (reported together) in midlife is associated with poorer ageing, disability, dementia, frailty outcomes and noncommunicable conditions. Twenty-four prospective cohort studies were included on alcohol intake. Evidence specific to midlife alcohol consumption was mixed. Some studies reported negative outcomes e.g. for dementia, mortality and cancer and some more positive outcomes e.g. for ageing and mental health. However studies found were sparsely distributed among different outcomes. Two studies reported moderate quality evidence of higher risk of dementia in non-drinkers and heavy drinkers compared to moderate drinkers, but limited evidence was available specific to midlife. There was limited evidence, from one study, that for people in lower SES groups high alcohol intake (>21 drinks/week) at midlife is related to poorer cognitive performance in later life. The review found a wealth of evidence from longitudinal cohort studies (n=57) relating to the association between

11 midlife smoking and late life outcomes. There is consistent evidence that midlife smoking has a detrimental effect on later life dementia, disability and other chronic disease outcomes including: healthy ageing, mobility, dementia, CVD outcomes, cancer (lung, pancreatic, colorectal, cancer mortality) and total mortality. Smoking had a detrimental effect on all populations for which studies were found, including men and women and in different ethnic groups. There is some consistent evidence (from 3 studies) that combinations of lifestyle behaviours (not smoking, fruit and veg intake, maintaining healthy weight, regular exercise, moderate alcohol intake) have beneficial outcomes for ageing well, disability, dementia, frailty outcomes and noncommunicable conditions. Point 21; p.6 MCI criteria We recommend also referring to the paper by Blossom et al. JAGS 55: (2007) which presents UK data. The paper explores the application of existing classifications of mild cognitive impairment (MCI) and associated states in a large population sample (i.e. a subsample of 2,640 individuals from the MRC CFAS longitudinal study). Using a systematic literature review to collect all symptom classifications for nonnormal dementia states, these were then operationalized retrospectively. Each participant was classified according to

12 each. Population prevalence estimates were variable (range %), reflecting differences in the focus and content of each state. Limited overlap existed between states such that many individuals were concurrently classified as normal and impaired. This highlights the heterogeneity in classification as captured using different definitions. Point 27; p. 7 All cost-effective primary prevention interventions have been implemented as far as practical We would argue that this criteria is not met there is limited evidence (if any!) on the effectiveness and cost-effectiveness of primary prevention interventions. In a review conducted by our group for NICE we found no intervention studies delivered in mid-life that demonstrate an impact on dementia; studies with long term follow-up are need. A copy of the report is available here (See Review 3):

13 A separate review is under way to assess the effectiveness and cost effectiveness of primary interventions delivered in later life the findings will be available in Point 32 & 33; p. 8 About screening test properties Technical point. Screening instruments, by their very nature, do not diagnose; they screen. Would remove word diagnostic. Also, for Table 2 & 3, it would be helpful to have information about the sample in which the studies were conducted many of these studies will have been conducted in primary care but few will have recruited a sample representative of the general populations (see below). Point 34; p.8 About potential tests Remove the words that appear promising Point 34; p.8 Instead or in addition to saying but test performance have not been reproduce in primary care relevant population, it would be important to make it clear that validation studies of screening tests should be conducted in representative samples of the general population (or the population likely to be the target of screening programmes, e.g. age defined). We would also like to highlight the CANTAB tool which is

14 currently being intensely marketed to health care professionals and promoted by the current government as a plausible tool for use in practice. The CANTAB tool has been examined in research settings but has not been fully validated for use in a UK health care context. Moreover (and more importantly) the sensitivity, specificity, negative and positive predictive values of the instrument remain unknown for screening as well as for case finding. Point 38; 13 Point 38-40; 13 There are a number of potential test that could be delivered in up to 10 minutes... Given the previous points (namely 34 and 37) where the report states that these tests are not validated for screening/inadequate performance properties, we suggest deleting the sentence. We conducted a systematic review, which aimed to appraise the acceptability, perceived risks and benefits arising from population screening. The review is the first to evaluate the attitudes and preferences of the general public and health care professionals regarding population screening for dementia based on the existing scientific literature. We identified 29 studies looking at attitudes and/or

15 preferences towards screening for dementia. Nine papers involved a total of 2,575 patients or people with dementia in their research. Five studies were based in the community and had participants recruited from the general public. In total 1,977 people from the population were included. Health care professionals constituted the largest group of participants in the identified studies. Fifteen studies included a total of 5,132 clinicians or health care practitioners. For patients, carers and general population seven themes/factors were found to influence their perception/attitudes towards screening: 1) existing health state 2) lifestyle and life view 3) awareness of dementia 4) role of clinician 5) communication 6) benefit 7) role of the family. Ten key themes/factors emerged for clinicians and healthcare professionala: 1) patient s existing health and comorbidities 2) awareness of dementia 3) confidence 4) duration of patient contact 5) screening tool 6) cost 7) disclosure 8) time 9) treatment and prognosis 10) stigma. Overall, the level of evidence is quite low. Although most

16 of the clinicians and patients involved in the studies included in this review consider dementia a serious condition, many questioned the need to identify it early through population screening. Attitudes and preferences regarding population level screening for dementia are complex and multi-factorial and our findings suggests that population screening for dementia may be acceptable neither to the general public nor to health care professionals. See abstract Point 76; p.19 In our aforementioned systematic review appraising the acceptability, perceived risks and benefits arising from population screening we found that whilst the presentation and recognition of symptoms do not impact on decisions to screen it is the attitudes, rather than knowledge, which may determine whether physicians conduct a full assessment. For the clinician there are a number of contextual issues (including current practice, poor prognosis, lack of treatment options, stigma and the duration of contact with the patient) and mechanisms (including the practicalities, awareness, confidence, accuracy of tools, cost, time, a patient s existing state of health and issues around disclosure) that appear to impact on acceptability and decisions to screen.

17 Appendix A Search strategy Technical point. We feel the following terms from our systematic review on attitudes and preferences would be useful in any further searching of the literature on the subject: exp NEUROPSYCHOLOGICAL TESTS/ (Neuropsych* adj3 (Test* OR assess*)).ti,ab (psychologic* adj3 (test* OR assess*)).ti,ab exp PSYCHOLOGICAL TESTS/ exp GERIATRIC ASSESSMENT/ "geriatric assess*".ti,ab exp QUESTIONNAIRES/ questionnaire*.ti,ab exp SELF-ASSESSMENT/ exp SELF-EXAMINATION/ (self adj3 assess*).ti,ab (self adj3 exam*).ti,ab exp INTERVIEWS AS TOPIC/ ((telephone interview*)).ti,ab 7 OR 8 OR 9 OR 10 OR 11 OR 12 OR 13 OR 14 OR 15 OR 16 OR 17 OR 18 OR 19 OR 20 exp MASS SCREENING/ ((mass screen*)).ti,ab "population screen*".ti,ab screen*.ti,ab detect*.ti,ab

18 p.21 Implementations for policy We welcome the statement that it is not appropriate to implement a national screening programme for dementia using cognitive assessment tools.

19 14/352 Attitudes and preferences towards screening for dementia: a systematic review of the literature 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: A thorough search of fifteen bibliographic databases was conducted (up to 12 July 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 we included; except opinion-based papers. Included papers were doubly quality assessed and thematically analysed using NVivo. The review adheres to the PRISMA checklist. Findings: 29,910 papers were identified of which 30 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. Interpretation: As 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. 19

20 14/352 Authors Mr Martin Steven 1 MPhil Dr. Kelly Sarah 1, Ph.D Dr. Cullum Sarah 2, Ph.D Prof. Dening Tom 3, FRCPsych Dr. Rait Greta 4, MD Dr. Fox Chris 5, MD Prof. Katona Cornelius 6, MD Prof. Brayne Carol 1, MD Dr Lafortune Louise 1, Ph.D Contact person Steven Martin, Institute of Public Health, Forvie Site, University of Cambridge School of Clinical Medicine Box 113 Cambridge Biomedical Campus Cambridge, UK CB2 0SR sm987@medschl.cam.ac.uk Authors and affiliations: 1 Cambridge Institute of Public Health, University of Cambridge, UK 2 Academic Unit of Psychiatry, University of Bristol, UK 3 Institute of Mental Health, University of Nottingham, Nottingham, UK 4 Research Department of Primary Care and Population Health, UCL Medical School, UCL, London, UK 5 Department of Psychological Sciences, Faculty of Medicine and Health Sciences, Norwich, UK Medical School, University of East Anglia, Norwich, UK 6 Division of Psychiatry, University College London, UK 20

21 14/352 Contributions of authors LL conceived and supervised the study. LL and SM designed and implemented the search strategies. SM and SK extracted data and synthesised the evidence. SM, LL, TD, SC quality assessed the evidence. All authors helped draft and edit the manuscript and have read and approved the final manuscript. Competing interests Dr. Katona reports grants from NIHR (HTA), during the conduct of the study. All other authors declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work. Funding This article presents independent research co-funding by the Alzheimer s Society (Project grant 129) and The BUPA Foundation, and supported by National Institute for Health Research Collaborations for Leadership in Applied Health Research and Care (CLAHRC) for Cambridgeshire and Peterborough. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. 21

22 14/352 There is no evidence supporting population screening for dementia Reporting on a systematic review of costs and benefits. Louise Lafortune*, Steven Martin, Chris Fox, Sarah Cullum, Tom Dening, Greta Rait, Cornelius Katona, Carol Brayne Background: Despite over a decade of efforts to improve timely detection, as many as 50% of people with dementia still do not receive a formal diagnosis or receive it too late. Population screening may provide part of the solution. However, it s relative costs and benefits are still unclear. We undertook a broad systematic review of population screening here we report on the evidence pertaining to the clinical, psychosocial and economic outcomes. Methods: Eligible studies included those looking at population screening either as a standalone or component of a dementia intervention compared with a routine pattern of care in general population or non-selected general practice or community care attendees. Models were included only in the review of economic outcomes. Relevant papers published by May 2012 were identified by unlimited database searches (including Medline, EMBASE, CINAHL, DARE) tailored to individual outcome categories. The AMSTAR tool guided the review process. Results: We found no evidence of the effect of screening on patient outcomes such as cognitive, mental or emotional health, social function, or planning. We didn t identify any studies looking at potential harms caused by the screening results (such as risk of depression, anxiety, stigma or independence). For economic outcomes (n=6), 3 primary studies reported on the direct cost per patient diagnosed; 2 related modelling studies compared a population screening scenario to other models of dementia care and one looked at screening in older drivers. These suggests that substantial resources are required to screen for dementia, which are determined by the age of the screened population, the properties of the screening instrument and the extent to which general practitioners are involved in follow-up assessments. Conclusions: The pressure for faster diagnosis and for population screening is increasing despite the lack of effective early treatment. Yet we found no evidence that, if rolled out, population screening would lead to better clinical or psychosocial outcomes, no evidence furthering our understanding of the risks it entails, and no indication of it s added value compared to current practice. Policy makers should be cautious about the adoption of population screening for dementia without any evidence of benefits or risks. 22

23 14/352 Learning Objective: Careful evaluation of the benefits and risks of population screening for dementia is needed before adoption if this costly large scale intervention. * Presenting author 23