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Models Of Patient Engagement for Alzheimer’s Disease - Sofia ref.: 115985

Periodic Reporting for period 3 - MOPEAD (Models Of Patient Engagement for Alzheimer’s Disease - Sofia ref.: 115985)

Reporting period: 2018-10-01 to 2019-12-31

Early detection of AD allows patients to have an active role in managing their condition, and to plan how to minimize the strain on their dear ones. Despite known benefits, a large proportion of dementia cases remain undiagnosed or receive a late stage diagnosis. The MOPEAD project addressed this issue by exploring innovative strategies to emerge “hidden” cases of cognitive impairment.
MOPEAD had a focussed set of objectives aimed at:
1. Establishing multiple key regional project sites across Europe to identify and test models of efficient earlier identification of mild AD dementia and prodromal AD patients, and awareness of AD, memory complaints, and cognitive decline risk.
2. Assessing key tools, mechanisms and processes for community engagement and patient identification and resource utilisation in various communities.
3. Comparing and contrasting various patient access models and their contribution to improved detection, diagnosis and clinical research.
4. Based on findings, establishing archetypes of patient access models for implementation in similar communities.
5. Advocating and distributing access models for broader application and for replication.
The principles used to achieve this included:
• Establishing regional hubs across five EU countries (ES, DE, NL, SE, and SL).
• Implementing, testing and evaluating 4 models for Patient Engagement (PE) involving 2000 patients to explore two categories (Mild AD and prodromal AD).
• The MOPEAD PE models are: 1) AD Citizen Science (online), 2) Open House Initiatives, 3) Primary care, 4) type 2 diabetes patients in tertiary care.
• Capitalise and leverage resources brought to MOPEAD by specialist partners to ensure effective engagement with the relevant stakeholders.
• Help bridge the gap between clinicians, practitioners, and health decision makers to harmonise discussions on how to tackle AD.
MOPEAD showed that innovative strategies can be useful for patient engagement, identifying more than 1100 individuals with MCI and mild AD that otherwise would remain undiagnosed. The results of MOPEAD suggest that these different strategies instead of being mutually exclusive could be complementary since they are targeting different populations. Thus, population based strategies such as Citizen Science and Open House showed great potential to engage a high number of younger individuals whereas patient based strategies engaged fewer participants but older and at higher risk of having cognitive impairment.
Through its dissemination and clinical activities MOPEAD contributed to raise the awareness among the general population, healthcare providers and policy makers of the benefits of patient engagement in early detection of AD
The consortium developed common protocols and logistics for the different strategies of patient engagement. A technological platform managed and analyse the data generated. Recruitment was conducted in 5 countries and the data analysed to find the most successful strategies. A dissemination plan was designed and carried out to publicize the aims and results of MOPEAD.
Four innovative pre-screening strategies were implemented to detect cognitive decline among individuals aged 65-85 years who had never received a dementia related diagnosis.
The number of individuals enrolled and the proportion of those with positive pre-screening results varied across strategies. The web-based tool evaluated the largest number of individuals (n=1487) and yielded 547 positive results (36.8%). The Open house initiative pre-screened 661 subjects of whom 235 (35.6%) obtained a positive result. A total of 435 patients were pre-screened in the primary care-based strategy and 193 of them (44.4%) were found to have a positive result. From diabetes clinics 264 patients underwent pre-screening and 154 (58.3%) showed a positive result.
A positive pre-screening result implied that individuals were at high risk of having mild cognitive impairment or AD and these individuals were referred to a MOPEAD memory clinic for a final diagnosis. This 2 step strategy allowed us to calculate the positive predictive value (PPV) of positive pre-screening from each strategy. A total of 402 individuals with a positive pre-screening result were evaluated: 91 from a web-based tool, 161 from an open house initiative, 94 patients from a primary care pre-screening, and 56 patients identified at diabetes clinics. The number of confirmed cases of MCI/AD and PPV were 49(53.8%), 82(50.9%), 58(61.7%), and 47(83.9%) respectively.
The results demonstrated that population based strategies (Citizen Science, Open House) have a greater potential for patient engagement whereas patient based strategies showed a best PPV. These differences could be explained because these 2 groups of strategies are targeting different populations in terms of age and baseline risk of AD.
MOPEAD clinical activities generated a wealth of data was that gathered into a harmonized database, containing demographic, cognitive and medical data of 2847 individuals. In a subset of 402 individuals extensive neuropsychological, functional, genetic and neuroimaging data are available. As the lumbar puncture was an optional procedure CSF biomarkers data are available just in a subgroup of participants.
MOPEAD will contribute a paradigm shift towards an earlier diagnosis of AD in several ways:
1. MOPEAD has developed innovative strategies and protocols for patient engagement proven to be useful to detect hidden cases of AD in the community. These strategies and protocols could be used in the future by the healthcare systems to overcome AD underdiagnosis. Additionally the comparison between the different strategies has provided valuable information. For example we learned that strategies targeting general population through advertising campaigns have the potential to engage large groups of motivated people. By contrast, strategies targeting patients in primary and tertiary care were able to engage fewer participants, but those were at higher risk of having cognitive impairment. We think that these learnings will be very useful to inform policy makers and pharmaceutical industry to design the future screening campaigns for AD or strategies to engage participants in AD clinical trials.
2. MOPEAD has showed the potential for patient engagement of a web-based strategy combining and online marketing campaign and online cognitive testing. This may pave the way for future initiatives in an increasingly technological world
3. MOPEAD has been useful to identify some of the obstacles that currently are hindering an earlier diagnosis of AD in the UE, mainly related to a lack of motivation for early diagnosis, both in part of the general population and in some medical practitioners. Future policies with the aim of identify hidden cases of AD should take it into account.
4. MOPEAD has showed that cognitive impairment is a very prevalent clinical feature in patients with type 2 diabetes. This is an important finding not only to identify hidden groups of people with AD in the community but also to improve the global clinical management of diabetic patients.
5. MOPEAD has contributed to raise awareness about the importance of an earlier diagnosis of AD among the general population, health care providers and policy makers, through dissemination activities such as conferences or messages in the media and materials (scientific research papers, educational leaflets and infographics)