Improving the diagnosis and management of Lewy body dementia: the DIAMOND-Lewy research programme including pilot cluster RCT
O'Brien, JT; Taylor, J-P; Thomas, A; et al.Bamford, C; Vale, L; Hill, S; Allan, L; Finch, T; McNally, R; Hayes, L; Surendranathan, A; Kane, J; Chrysos, AE; Bentley, A; Barker, S; Mason, J; Burn, D; McKeith, I
Date: 28 July 2021
Journal
Programme Grants for Applied Research
Publisher
NIHR Journals Library
Publisher DOI
Abstract
Background
Lewy body dementia (LBD), comprising both dementia with Lewy bodies (DLB) and Parkinson’s
disease dementia (PDD), is the second commonest cause of neurodegenerative dementia. Existing
evidence suggests it is under-diagnosed and without a consistent approach to management.
Objectives
To improve the diagnosis and management ...
Background
Lewy body dementia (LBD), comprising both dementia with Lewy bodies (DLB) and Parkinson’s
disease dementia (PDD), is the second commonest cause of neurodegenerative dementia. Existing
evidence suggests it is under-diagnosed and without a consistent approach to management.
Objectives
To improve the diagnosis and management of LBD by: a) understanding current diagnostic practice
for DLB and PDD; b) identifying barriers and facilitators to diagnosis and management; c) developing
evidence-based assessment toolkits to improve diagnosis of DLB and PDD; d) producing a
management toolkit to facilitate management; e) undertaking a pilot cluster randomised clinical trial.
Design
Work package 1 (WP1) assessed clinical diagnostic rates from casenotes for DLB and PDD before
and after (WP1R) introduction of an assessment toolkit. In WP2, we developed a management toolkit
for LBD. In WP3 we developed assessment toolkits for DLB and PDD and piloted these and the
management toolkit in a clinical service. In WP4 we undertook a pilot study of 23 services in nine
NHS trusts who were cluster randomised to receiving and using the management toolkit or standard
care. WP5 comprised a series of qualitative studies examining barriers and facilitators to diagnosis
and management.
Setting
Secondary care memory assessment and movement disorder services in England.
Interventions
Assessment toolkits for LBD consisted of questions for diagnostic symptoms, management toolkits
comprised 161 guidance statements grouped under 5 symptom domains.
Review methods
The systematic reviews of pharmacological and non-pharmacological management were based on
published literature, with meta-analysis when possible, following search of several electronic
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databases and the grey literature using terms related to Lewy Body Dementia, without restriction on
time or language.
Participants
Participants aged over 50 diagnosed with DLB or PDD and, for WP1 and WP1R, non-DLB and nonPDD controls. The qualitative studies included people with LBD, carers and professionals.
Main outcome measures
For WP1 and 1R, diagnostic rates for DLB and PDD as a proportion of all dementia or PD. For WP2
and WP3 the production of diagnostic and management toolkits. For WP4 feasibility of undertaking a
cluster randomised trial of the toolkits, measured by number of participants recruited and use of the
toolkits, assessed qualitatively.
Results
WP1: 4.6% of dementia cases in secondary care received a DLB diagnosis, with significant
differences in diagnostic rates between services and 9.7% of those with Parkinson’s disease had a
diagnosis of PDD. There was evidence of delays in diagnosis for both DLB and PDD compared to
controls, and costs of DLB and PDD were also greater than those for matched controls (p <0.01 for
both).
WP2: We produced 252 statements regarding LBD management and, following a Delphi process, 161
statements were included in a management toolkit.
WP3: Piloting indicated that separate assessment toolkits for use in memory clinic and movement
disorder services were preferred, but a single toolkit for LBD management was suitable.
WP4: We were able to recruit LBD subjects to target, and recruited 131 patients within 6 months
(target 120), of whom over 80% were retained in the study at 6 months.
WP5: Barriers to diagnosis and management of LBD were complex. Managing LBD often requires
input from a range of specialties, and therefore care pathways may be fragmented. Positive attitudes to
diagnosing LBD, working with a team with expertise in LBD and opportunities for cross-specialty
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discussion of patients with complex needs facilitated diagnosis and management. The toolkits were
generally well received, particularly the management toolkit. Implementation, however, varied
reflecting differences in attitudes, skills, time and local leadership.
WP1R: Following introduction of the assessment toolkit we found that 9.7% of dementia cases had
DLB (a significant increase from baseline, p=0.0019) but PDD rates were similar (8.2%) to baseline.
Limitations
We only included two geographical regions and evidence informing the management toolkit was
limited. WP4 was a pilot study, and therefore we did not set out to assess the extent to which use of
the management toolkit altered outcomes at the individual patient level. We noted implementation of
the toolkits was variable. The increase in diagnostic rates in DLB following introduction of the
assessment toolkits cannot be necessarily be causally attributed to them.
Conclusions
DLB and PDD were diagnosed in secondary care NHS services with a lower frequency (around half)
than that expected from known prevalence rates. The introduction of assessment toolkits for DLB and
PDD was associated with increased diagnostic rates of DLB but not PDD. Qualitative studies
indicated inherent complexities of the disease itself, requiring input from different specialties with the
potential for fragmented services, a workforce with variable training and confidence in LBD and
negative attitudes towards diagnosis. The cluster randomised pilot trial demonstrated that patients
could be successfully recruited and provided preliminary evidence that the toolkits could be
implemented in clinical services.
Future Work
The evidence base informing the management of LBD is limited, especially for non-pharmacological
interventions. More well designed randomised controlled trials for both cognitive and non-cognitive
symptoms are needed.
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