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Headline
This research programme showed that Lewy body dementia is often under diagnosed, and the introduction of assessment and management toolkits can improve the diagnosis of dementia with Lewy bodies, but not Parkinson’s disease dementia.
Abstract
Background:
Lewy body dementia, comprising both dementia with Lewy bodies and Parkinson’s disease dementia, is the second commonest cause of neurodegenerative dementia. Existing evidence suggests that it is underdiagnosed and without a consistent approach to management.
Objectives:
To improve the diagnosis and management of Lewy body dementia by (1) understanding current diagnostic practice for dementia with Lewy bodies and Parkinson’s disease dementia; (2) identifying barriers to and facilitators of diagnosis and management; (3) developing evidence-based assessment toolkits to improve diagnosis of dementia with Lewy bodies and Parkinson’s disease dementia; (4) producing a management toolkit to facilitate management; and (5) undertaking a pilot cluster randomised clinical trial.
Design:
Work package 1 assessed clinical diagnostic rates from case notes for dementia with Lewy bodies and Parkinson’s disease dementia before and after (work package 1 repeated) introduction of an assessment toolkit. In work package 2, we developed a management toolkit for Lewy body dementia. In work package 3, we developed assessment toolkits for dementia with Lewy bodies and Parkinson’s disease dementia and piloted these and the management toolkit in a clinical service. In work package 4, we undertook a pilot study of 23 services in nine NHS trusts that were cluster randomised to receiving and using the management toolkit or standard care. Work package 5 comprised a series of qualitative studies, examining barriers to and facilitators of diagnosis and management.
Setting:
Secondary care memory assessment and movement disorder services in England.
Interventions:
Assessment toolkits for Lewy body dementia consisted of questions for diagnostic symptoms, and management toolkits comprised 161 guidance statements grouped under five symptom domains.
Review methods:
The systematic reviews of pharmacological and non-pharmacological management were based on published literature, with meta-analysis when possible, following a search of several electronic databases and the grey literature using terms related to Lewy body dementia, without restriction on time or language.
Participants:
Participants aged ≥ 50 years diagnosed with dementia with Lewy bodies or Parkinson’s disease dementia and, for work package 1 and work package 1 repeated, non-dementia with Lewy bodies and non-Parkinson’s disease dementia controls. The qualitative studies included people with Lewy body dementia, carers and professionals.
Main outcome measures:
For work packages 1 and 1 repeated, diagnostic rates for dementia with Lewy bodies and Parkinson’s disease dementia as a proportion of all dementia or Parkinson’s disease. For work packages 2 and 3, the production of diagnostic and management toolkits. For work package 4, feasibility of undertaking a cluster randomised trial of the toolkits, measured by number of participants recruited and use of the toolkits, assessed qualitatively.
Results:
Work package 1 – 4.6% of dementia cases in secondary care received a dementia with Lewy bodies diagnosis (with significant differences in diagnostic rates between services) and 9.7% of those with Parkinson’s disease had a diagnosis of Parkinson’s disease dementia. There was evidence of delays in diagnosis for both dementia with Lewy bodies and Parkinson’s disease dementia compared with control patients, and the costs of dementia with Lewy bodies and Parkinson’s disease dementia were also greater than those for matched controls (p < 0.01 for both). Work package 2 – we produced 252 statements regarding Lewy body dementia management and, following a Delphi process, 161 statements were included in a management toolkit. Work package 3 – piloting indicated that separate assessment toolkits for use in memory clinic and movement disorder services were preferred, but a single toolkit for Lewy body dementia management was suitable. Work package 4 – we were able to recruit Lewy body dementia patients to target and recruited 131 patients within 6 months (target n = 120), of whom > 80% were retained in the study at 6 months. Work package 5 – barriers to diagnosis and management of Lewy body dementia were complex. Managing Lewy body dementia often requires input from a range of specialties and, therefore, care pathways may be fragmented. Positive attitudes to diagnosing Lewy body dementia, working with a team with expertise in Lewy body dementia and opportunities for cross-specialty 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. Work package 1 repeated – following introduction of the assessment toolkit, we found that 9.7% of dementia cases had dementia with Lewy bodies (a significant increase from baseline; p = 0.0019), but Parkinson’s disease dementia rates were similar (8.2%) to baseline.
Limitations:
We included only two geographical regions and evidence informing the management toolkit was limited. Work package 4 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 dementia with Lewy bodies following introduction of the assessment toolkits cannot be necessarily causally attributed to them.
Conclusions:
Dementia with Lewy bodies and Parkinson’s disease dementia 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 dementia with Lewy bodies and Parkinson’s disease dementia was associated with increased diagnostic rates of dementia with Lewy bodies, but not Parkinson’s disease dementia. Qualitative studies indicated inherent complexities of the disease itself, with treatment requiring input from different specialties and the potential for fragmented services, a workforce with variable training and confidence in Lewy body dementia, 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 Lewy body dementia is limited, especially for non-pharmacological interventions. More well-designed randomised controlled trials for both cognitive and non-cognitive symptoms are needed.
Trial registration:
Current Controlled Trials ISRCTN11083027.
Funding:
This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 7. See the NIHR Journals Library website for further project information.
Contents
- Plain English summary
- Scientific summary
- SYNOPSIS
- Patient and public involvement throughout the DIAMOND-Lewy programme
- Work package 1: baseline study of the diagnosis and management of Lewy body dementia
- Work package 2: development of management toolkits for Lewy body dementia
- Work package 3: development of assessment toolkits for the diagnosis of Lewy body dementia
- Work package 4: a pilot cluster randomised trial of the management toolkit
- Work package 5: qualitative studies throughout the DIAMOND-Lewy programme
- Work package 1 repeated: re-assessment of diagnostic rates for Lewy body dementia after introduction of the assessment toolkits for diagnosis
- Overall programme discussion
- Conclusions and recommendations for research
- Acknowledgements
- References
- Appendix 1. Health economic analysis for work package 1
- Appendix 2. Review protocol for systematic reviews
- Appendix 3. Search strategies for systematic reviews
- Appendix 4. List of Delphi panel contributors
- Appendix 5. Overview of management guideline
- Appendix 6. Health economic analysis for work package 4
- Appendix 7. Analysis of clinician questionnaires from work package 5
- Appendix 8. Factors influencing the diagnosis and management of Lewy body dementia: illustrative quotations from work package 5
- Appendix 9. The acceptability of the assessment and management toolkits: illustrative quotations from work package 5
- Appendix 10. Implementation of the assessment and management toolkits: illustrative quotations from work package 5
- Appendix 11. Proposed implementation strategy for work package 4
- List of abbreviations
- List of supplementary material
About the Series
Declared competing interests of authors: John T O’Brien reports grants from the National Institute for Health Research (NIHR) during the conduct of the study, personal fees from TauRx Therapeutics Ltd (Aberdeen, UK), grants and personal fees from Avid Radiopharmaceuticals/Eli Lilly and Company (Indianapolis, IN, USA) and personal fees from Eisai Co. Ltd (Tokyo, Japan), GE Healthcare (Chicago, IL, USA), and AXON Neuroscience (Bratislava, Slovakia) outside the submitted work. John-Paul Taylor reports grants from NIHR during the conduct of the study, non-financial support from Axovant Gene Therapies Ltd (Hamilton, Bermuda) and personal fees from GE Healthcare outside the submitted work. Alan Thomas reports grants from NIHR during the conduct of the study, and grants from GE Healthcare outside the submitted work. Luke Vale reports grants from NIHR during the conduct of the study, and membership of the Health Technology Assessment (HTA) Clinical Trial Committee (2014–18). Richard McNally reports grants from NIHR during the conduct of the study, and membership of the Health Services and Delivery Research (HSDR) Commissioned Panel (2015–19). James Mason reports grants from NIHR during the conduct of the study, and membership of the NIHR HSDR Funding Committee (2017–20), the NIHR HTA End of Life Care and Add-on Studies board (2015–2016) and the NIHR HTA Efficient Study Designs – 2 board (2015–16). David Burn reports grants from NIHR during the conduct of the study, and membership of the Efficacy and Mechanism Evaluation Prioritisation Group (2012–16). Ian McKeith reports grants from NIHR during the conduct of the study, personal fees from Eisai Co. Ltd, GE Healthcare, Axovant Gene Therapies Ltd, Sumitomo Dainippon Pharma (Osaka, Japan) and Sanofi SA (Paris, France), and grants and personal fees from La Fondation pour la Recherche sur Alzheimer (Paris, France) outside the submitted work.
Article history
The research reported in this issue of the journal was funded by PGfAR as project number DTC-RP-PG-0311-12001. The contractual start date was in January 2014. The final report began editorial review in May 2019 and was accepted for publication in March 2021. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Disclaimer
This report contains transcripts of interviews conducted in the course of the research and contains language that may offend some readers.
Last reviewed: May 2019; Accepted: March 2021.
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