screening for cognitive impairment, alzheimer’s disease and other dementias: opinions of european...

The Journal of Nutrition, Health & Aging©Volume 14, Number 7, 2010

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Introduction

Like most chronic conditions and complex syndromes,Alzheimer’s disease (AD) and other dementias are not alwaysdiagnosed for all people with the conditions and there is anincreasing international consensus encouraging earlier andmore timely identification of cognitive impairment (1). Thisreflects the professional view that earlier identification ofcognitive impairment benefits patients through the prompttreatment with pharmaceutical agents (2, 3) and psycho-socialinterventions (4, 5). Consequently, families and caregivers,health care systems and society in general are perceived tobenefit (6). The reported advantages from a wide range ofstudies involving professional and informal caregivers that havebeen systematically reviewed include a better understanding ofthe condition, an end to uncertainty, the ability to plan for thefuture and access to formal and informal support (7). Someolder citizens have expressed concerns about being labeledcognitively impaired (8) and some people with a diagnosis ofdementia have found it distressing and stigmatising (7, 9-12).However, the perspectives of older people at risk of becoming“a person with dementia” and of people with dementia havebeen significantly neglected in empirical research (7, 13, 14).Recently, older patients’ attitudes towards dementia screeningwere measured in primary care clinics in the United States and

the United Kingdom (15). Despite significantly higheracceptance of dementia screening by patients in the UnitedKingdom than in the United States, for them a diagnosis ofdementia carried a greater perceived impact on independenceand suffering.

The growing consensus for early detection of cognitiveimpairment raises the question of whether validated universalcommunity- or primary care–based dementia screeningprogrammes would lead to more timely identification ofcognitive impairment. Current guidance from the USPreventive Services Task Force concludes that the evidence forthe benefit of screening (16) is insufficient to recommend for oragainst routine screening for dementia in older adults (17), andthis guidance has led to a recommendation against generalpopulation screening for dementia in the United Kingdom (18).Whether routine screening for cognitive impairment isappropriate therefore remains contested. The IMPACT surveyqueried physicians, caregivers, payors and members of thegeneral public from 5 European countries regarding theiropinions towards screening for AD.

Methods

Approximately 1800 respondents from France, Germany,Italy, Spain and the United Kingdom participated in a

SCREENING FOR COGNITIVE IMPAIRMENT, ALZHEIMER’S DISEASE AND OTHER DEMENTIAS

SCREENING FOR COGNITIVE IMPAIRMENT, ALZHEIMER’S DISEASE AND OTHER DEMENTIAS: OPINIONS OF EUROPEAN CAREGIVERS, PAYORS,

PHYSICIANS AND THE GENERAL PUBLIC

J. BOND1, N. GRAHAM2, A. PADOVANI3, J. MACKELL4, S. KNOX5, J. ATKINSON6

1. Institute of Health and Society and Institute for Ageing and Health, Newcastle University, United Kingdom; 2. Alzheimer's Disease International, London, United Kingdom; 3. Department of Medical and Surgical Sciences, Università degli Studi di Brescia, Brescia, Italy; 4. Pfizer Inc, New York, New York, United States; 5. Eisai Europe Ltd., Hertfordshire,

United Kingdom; 6. Pfizer Ltd, Surrey, United Kingdom. Corresponding author: John Bond, Newcastle University, Newcastle upon Tyne NE2 4AA, United Kingdom, Phone: +44 (0) 191222 6777, E-mail: [email protected]

Abstract: The IMPACT survey queried physicians, caregivers, payors and members of the general public from 5European countries (France, Germany, Italy, Spain and the United Kingdom) regarding their opinions towardsscreening for Alzheimer’s disease (AD) as part of a 30-minute Web-based questionnaire conducted betweenApril and May 2009. A larger proportion of caregivers (84%) and members of the general public (80%) than ofphysicians (56%) or payors (40%) viewed routine screening for AD as extremely or very important (P<0.001 forcaregivers or general public vs physicians or payors). When asked if everyone should be routinely screened forAD at age 65, a smaller proportion of physicians (42%) and payors (44%) than members of the general public(81%) or caregivers (80%) agreed (P<0.001 for caregivers or general public vs physicians or payors). Theseopinions were generally consistent across the 5 countries for each respondent group. A notable exception wasphysician respondents from Italy, where most generalists and specialists actually favoured screening. Overall,generalists had a more positive attitude towards screening than specialists. The most frequently cited reasongiven by those who did not favour routine screening at age 65 was screening inaccuracy. This article discussesthese results in relation to what screening is, when to screen and the barriers to screening. Despite the majority ofIMPACT respondents being in favour of screening for AD, the evidence to support the introduction of populationscreening for cognitive impairment is not available; however, the importance of optimal identification of AD andother dementias in primary care should be a priority for community health professionals and payors. In order todo this effectively, further work is required to identify good assessment guidelines for use during opportunisticscreening for cognitive impairment in primary care.

Key words: Alzheimer’s disease, screening, early diagnosis, physicians, caregivers, payors, general public.

Received April 1st, 2010Accepted for publication July 8, 2010

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30-minute Web-based questionnaire between April and May2009. The respondents included approximately 1000 from thegeneral public, 500 physicians, 250 caregivers and 50 payors,with approximately equal numbers of each group from each ofthe 5 countries. For the purposes of this survey, the termspecialist refers to those physicians whose field ofspecialization includes AD; the term generalist refers tophysicians whose field of specialization encompasses generaladult medicine, or who do not have specialty training.Generalists (n=250) included general practitioners, hospitalgeneral physicians, family physicians and internists; specialists(n=250) included neurologists, geriatricians, neuro-psychiatrists, psychiatrists and psychogeriatricians. For acomplete description of each respondent group and the surveymethodology see the article in this issue by Jones, et al (19).

All respondents were asked, “How important is it to doroutine screening for AD for people aged 65 and over?” Forthis question, respondents could choose extremely important,very important, somewhat important, not very important andnot important at all. They were also asked, “Once someoneturns 65, do you believe everyone should be routinely screenedfor AD?” to which they could choose don’t know; yes, theyshould be screened; or no, they don’t need to be screened.Physicians, caregivers and those from the general public whoanswered no to the second question were then asked why theyshould not be screened and given a list of possible reasons fromwhich to choose (they could choose more than 1). Payors werenot asked to give reasons why they did not believe everyoneshould be screened at age 65.

Results

Importance of routine screening for ADAlthough a large majority of each group favored screening, a

greater percentage of caregivers (97%) and members of thegeneral public (97%) than physicians (83%) or payors (74%)viewed routine screening for AD as either extremely, very orsomewhat important (P≤0.001 for caregivers or general publicvs payors or physicians; P≤0.05 for physicians vs payors). Thedegree of importance of screening varied amongst therespondent groups. The vast majority of caregivers (84%) andthe general public (80%) believed it was extremely or veryimportant, whereas only 56% of physicians and 40% of payorsfelt that strongly (Fig. 1). The consensus was similar amongstphysicians from each country, except for those from Italy,where the majority (80%) felt screening was extremely or veryimportant (P≤0.001 vs France, Germany and the UnitedKingdom; P≤0.01 vs Spain). More generalists (62%) thanspecialists (50%) thought screening was extremely or veryimportant (P≤0.05 for the comparison). This was true in France(54% vs 32%; P≤0.05), Germany (64% vs 48%) and Spain(74% vs 44%; P≤0.001). In the United Kingdom morespecialists than generalists (50% vs 38%) agreed. The majorityof both generalists (82%) and specialists (78%) from Italythought screening is extremely or very important. The number

of payors who felt screening was extremely or very importantranged from a low of 2 of 10 in Spain to a high of 8 of 10 inGermany. There was good agreement between caregivers fromeach country (78% to 88%) and amongst members of thegeneral public from each country (80% to 87%), except forFrance, where only 67% agreed that screening was extremely orvery important (P≤0.001 for Italy and the United Kingdom vsFrance; P≤0.01 for Spain vs France; P≤0.05 for Germany vsFrance).

Figure 1How important is screening for AD?

Routine screening at age 65When asked if everyone should be routinely screened for AD

at age 65, fewer physicians (42%) and payors (44%) thanmembers of the general public (81%) or caregivers (80%)agreed (Fig. 2). In France, Germany and the United Kingdom,more physicians were opposed to screening at age 65 than werein favour of it. In Italy, more than twice as many physiciansfavoured screening at age 65 (66%) than opposed it (31%),whilst in Spain they were equally divided (yes, 46%; no, 44%)(P≤0.01 for Italy [yes] vs Spain [yes]). More generalists (53%)than specialists (32%) favoured routine screening at age 65(P≤0.001 for the comparison). Generalists favouring screeningranged from 22% in the United Kingdom to 70% and 74% inItaly and Spain, respectively. Specialists favouring screeningranged from 18% in Germany to 58% in Italy. Only in theUnited Kingdom were there more specialists (34%) thangeneralists (22%) who favoured routine screening. Only 2 of 10payors from Italy or Spain favoured routine screening whereas7 of 10 from Germany did. Amongst caregivers from individualcountries, those who favoured routine screening ranged from70% in Italy to 94% in France, while amongst the generalpublic it ranged from 73% in Germany to 90% in Spain (P≤0.01for both the comparisons).

Reasons for not screeningThe most frequently cited reasons given by physicians who

did not favour routine screening at age 65 were screeninginaccuracy (44%), costs too much (33%) and lack of treatment

(24%) (Table 1). The most frequently cited reason forphysicians from the United Kingdom (44%), Germany (42%)and Spain (66%) was screening inaccuracy, whereas for thosefrom France it was lack of treatment (44%) and for those fromItaly it was monetary cost (58%). Both generalists (33%) andspecialists (50%) most frequently cited screening inaccuracy asthe reason to not routinely screen, followed by monetary cost(30% and 34%, respectively). Generalists cited too much time(28%) more frequently than lack of treatment (18%), whereas itwas the opposite with specialists (14% vs 28%).

Figure 2Do you believe everyone who turns 65 should be routinely

screened for AD?

The top 3 reasons cited by the general public for notroutinely screening were screening inaccuracy (29%), costs toomuch (19%) and it takes too much time (16%). For caregivers,they were screening inaccuracy (31%), nothing you can do ifyou know (31%) and monetary cost (28%).

Table 1Reasons Given for Not Routinely Screening at Age 65

Respondents, %Reason for not screening Physicians Caregivers General

public

I. Screenings for AD are not accurate 44* 31 29II. It will cost too much money 33† 28 19III. There is no treatment for it 24†,‡ 17 11IV. It takes too much time 19§ 10 16V. There is nothing you can do if you know 12 31” 9VI. It would be depressing to know 12 10 13VII. It is not necessary to detect early 11 10 8VIII. Other reason 18 17 25

*P≤0.001 for Physicians vs Caregivers and General public; †P≤0.001 for Physicians vsGeneral public; ‡P≤0.05 for Physicians vs Caregivers; §P≤0.01 for Physicians vsCaregivers; “P≤0.01 for Caregivers vs Physicians and General public.

Discussion

The responses from participants in the IMPACT Internetsurvey suggest that some caregivers and members of the

general public may have a more positive opinion of routinescreening for AD than those physicians or payors whoresponded. Participant responses were generally consistentacross the 5 countries for each group. Overall, more generalistswere in favour of screening than specialists, with a notableexception being the physician participants in Italy. There, amajority of generalists and specialists were in favour ofscreening. The most frequently mentioned barriers to routinescreening by physicians, caregivers and members of the generalpublic were the absence of an effective screening procedure,cost and the lack of effective treatments.

The IMPACT survey was an Internet survey that usedselected volunteer panels of physicians, informal caregivers,general public and payors. The findings about opinions onscreening for cognitive impairment may be unrepresentative ofthese 4 groups in the 5 countries surveyed since panel membersand respondents are self selected. However, these findings raisea number of interesting questions that contribute to the debateabout the future of routine screening for cognitive impairment.

What is screening?An assumption of the questions asked of participants within

the IMPACT survey was that they had a shared understandingof what was meant by screening, an assumption that permeatesmuch of the discussion about screening for cognitiveimpairment in the literature (20). The question, “What isscreening?” is not simply of academic interest because it hasprofound public policy implications for the way that any formof screening is implemented with European health caresystems. “Health screening” is undertaken in a range of healthcare settings and at different points in the course of disease, andincludes universal population screening, targeted populationscreening, opportunistic screening or case finding in primarycare or inpatient and outpatient secondary care, and formalassessment in specialist inpatient and outpatient care settings.

Population screening of the whole population is unusual andmost often is focussed on specific population groups (e.g.women aged 50 years or over for breast cancer screening andmen and women aged 60-69 years for bowel cancer screeningin the United Kingdom). Population screening may be self-administered (e.g. bowel cancer screening) or requireattendance at a community-based or specialist clinic (e.g. breastcancer screening). Opportunistic screening or case finding as aform of screening is routinely undertaken in primary andsecondary care for a range of chronic conditions (e.g.hypertension and diabetes) for which good treatments exist andreliable clinical measurements or tests with good sensitivity andspecificity are available. Primary and secondary well-personclinics and routine health checks provide the sameopportunities. Full diagnostic assessments in specialist clinicsand settings have also been described as screening.

When should we screen?In supporting the case for or against screening there are 2

key considerations: ethics and practicalities (including cost). A

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policy brief on screening in Europe published by the WorldHealth Organization (21) highlights 4 key criteria for screening:1) the condition should be an important health problem withhigh prevalence and impact on individuals and society thatshould be easily recognizable during the latent or earlysymptomatic stage; 2) there should be a suitable diagnostic testthat is available, safe and acceptable to the target population; 3)there should be an accepted and established treatment orintervention and these should be available; 4) “The cost of casefinding (including diagnosis and treatment) should beeconomically balanced in relation to possible expenditure onmedical care as a whole.” There are long-established criteria forthe evaluation of suitable screening “tests.” They should besimple to perform and easy to interpret; acceptable to“patients”; accurate; cost-effective; and have good reliability(repeatability), sensitivity and specificity (22).

Barriers to screening for cognitive impairmentContemporary discussion about screening has focussed both

on population screening of older adults for cognitiveimpairment (20) and the role of primary care physicians toscreen for cognitive impairment (23). In terms of therecommendations made on screening for the European Union,cognitive impairment, AD and other dementias are unable tosatisfy all the criteria identified.

ImportanceThere is no disagreement about the importance of cognitive

impairment globally and its impact on individuals, families andsocieties (24), although given the lack of a “gold standard” test,cognitive impairment is not easily recognized prospectively.The barrier of “no effective treatment” often cited may bedebated, since treatments to reduce the decline in cognition, andthe associated loss of function, could have benefits at theearliest evidence of dementia (6). For many chronic conditions(high blood pressure, high cholesterol, COPD, Parkinson’s)existing treatments do not cure, but do help manage thesymptoms of disease.

Screening testNo generally acceptable test exists for use in population

screening although there are a number of recommendations foruse in primary care “case finding” (25-32). A systematic reviewof screening tests of cognitive impairment in generalpopulations and primary care is urgently required given thediversity of views expressed in recent papers.

Cost effectiveness of treatment and interventionsThe evidence base for the cost-effectiveness of

pharmacological treatments and non-pharmacological psycho-social interventions for early cognitive impairment remainsweak. Established pharmacological treatments and non-pharmacological psycho-social interventions exist but these arenot universally available in all EU countries since their use

remains contested on grounds of cost-effectiveness except forin people with moderate dementia (12).

Conclusions

Despite the majority of IMPACT respondents being infavour of screening for AD, the evidence to support theintroduction of population screening for cognitive impairmentis not available. However, the importance of optimalidentification of AD and other dementias in primary careshould be a priority for community health professionals, thegeneral public and payors. In order to do this effectively,further work is required to identify good assessment guidelinesfor use during opportunistic screening of cognitive impairmentin primary care.

Disclosure: The IMPACT study was funded by Pfizer Inc and Eisai Inc. This articlewas funded by Pfizer Inc and Eisai Inc. Editorial support was provided by Tom Claus,PhD, of PAREXEL and was funded by Pfizer Inc and Eisai Inc.

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