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| Name | Class |
|---|---|
| University College Cork | OTHER |
| University of Leeds | OTHER |
| Fundacion Intras | UNKNOWN |
| Universidade do Porto |
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This pilot study will test a digital care planning decision support system for patients with dementia.
The clinical study is part of an EU-funded project on the use of artificial intelligence for patients with dementia. This study will test a digital toolkit for advance care planning and decision making for patients with dementia and pilot-test this digital support system for feasibility and acceptability.
Other workpackages of the AI4HOPE project will design a digital technology platform to provide relevant, timely and appropriate information for people with dementia and their carers, and to facilitate them to document their goals, wishes, and preferences for future care.
Patients with mild to moderate dementia will be recruited for the pilot study in the six participating countries. The study population includes all types of dementia without stratification, as the aim of the study is to develop a digital technology platform to facilitate ACP for clinical practice in any patient with cognitive impairment from any type of dementia.
Even though the digital platform could be adapted to be useful for patients with advanced dementia and more severe cognitive impairment, or for use just by their families, the pilot study will recruit only patients with mild or moderate dementia, who will still be able to provide informed consent, and who will be able to self-assess for patient-related outcome or patient-related experience measures to inform the assessment of the digital technology platform.
Patients with dementia treated in the participating study centers will be screened for inclusion criteria and, if suitable will be invited to participate. The study will be performed for up to 90 days, with optional extension to 180 days according to patients' preferences.
Patients with baseline data and at least one interaction with the digital platform and data completed before and after that interaction will be included in the evaluation.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Advance Care Planning toolkit | Other | Provision of access to the digital ACP (Advance Care Planning) platform to patients and caregivers, baseline assessment with the ACP digital platform on day 0. Information to guide decision making around care and treatment preferences are accessed by patients and carers on days 1 to 7. Where desired, care and treatment preferences are recorded. Evaluation of usefulness and burden of the digital platform for ACP on day 7. Content stored on digital platform for ACP shared across care settings to those involved in care of participant on day 8 to 29. Evaluation of usefulness and burden of the digital platform for ACP, participant and carer experience of completion. Initial exploration of impact on communication between health and social care professionals, access to timely information to inform clinical decision making, and efficiency savings (e.g. reduction in paper forms and duplication, less time chasing information) on day 90. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Advance Care Planning Toolkit | Other | Participants or their caregivers will access the digital platform for advance care planning |
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| Measure | Description | Time Frame |
|---|---|---|
| Feasibility and acceptability of digital ACP-platform, the Dementia Journey Companion (DJC) | Participant feedback on feasibility, usefulness and burden of ACP-platform; acceptability of content included in the ACP-platform for participantd, user satisfaction with conversational support and suc-cess rate in achieving communicative goals, answering questions and providing guidance. | 30 days |
| Measure | Description | Time Frame |
|---|---|---|
| Effect of DJC on documentation of ACP | Rating of benefit by health care professionals. | 30 days |
| Completion rate of preference documentation | Completion rate of preference documentation across domains (daily living, medical, end-of-life) and frequency of use; frequency of chatbot interactions; number of memories, stories, and preferences documented. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Lukas Radbruch, MD | Contact | +4915158233747 | lukas.radbruch@ukbonn.de | |
| Holger Brunsch, Dr. | Contact | +49 228 287 10309 | holger.brunsch@ukbonn.de |
| Name | Affiliation | Role |
|---|---|---|
| Lukas Radbruch, MD | Department of Palliative Medicine, University Hospital Bonn | Principal Investigator |
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| ID | Term |
|---|---|
| D003704 | Dementia |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
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| OTHER |
| University Medical Centre Maribor | OTHER |
Feasibility study
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| 30 days |
| Assessment of pain, distress and anxiety | Assessment of pain, distress and anxiety (PROM as part of assessment toolkit). | 30 days |
| D001523 | Mental Disorders |