Meaningful Aspects of Health for Adults With Dementia, Their Care Partners and Healthcare Practitioners

NCT06242574 | Withdrawn

• 1 other identifier: 23-PP-11
• Study Type: observational
• Target: N/A
• Locations: 1 country
• Sites: 1

Brief Summary

The aim of this study is to describe, using a non-interventional survey, the relevant aspects of health in adults with ADRD for the patients themselves, their carers and healthcare professionals. Commonalities and differences between these three stakeholders and according to the severity of the dementia will also be studied.

Conditions

Alzheimer Disease

Outcome Measures

Primary Outcomes (2)

• Assessment of the meaningful aspects of health that patients, care partners and clinicians consider most important when considering improvement in the ADRD patient's condition and when considering prevention of decline in the ADRD patient's condition

  questionnaire specially developed for the study containing a set of MAH ranking exercises and free text response questions

  day 1

• Assessment of the meaningful aspects of health that patients, care partners and clinicians consider most important when considering prevention of decline in the ADRD patient's condition

  questionnaire specially developed for the study containing a set of MAH ranking exercises and free text response questions

  day1

Study Arms (3)

Adults with Alzheimer's disease and related dementia

75 patients with ADRD

Other: Survey

Care partners of Adults with Alzheimer's disease and related dementia

75 care partners for adults with ADRD

Other: Survey

Clinicians who treat patients with Alzheimer's disease and related dementia

25 healthcare practitioners

Other: Survey

Interventions

Survey OTHER

Each group will have to complete a questionnaire online, taking about 30 minutes.

Adults with Alzheimer's disease and related dementia; Care partners of Adults with Alzheimer's disease and related dementia; Clinicians who treat patients with Alzheimer's disease and related dementia

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults with ADRD, their care givers and Health-care practitioners

Adults with Alzheimer's disease and related dementia: 1. ADRD inclusive of the following : * Mild dementia due to Alzheimer's disease inclusive of: * Mild Cognitive Impairment (MCI), * Prodromal Alzheimer's disease, * Subjective cognitive impairment, * Early onset dementia due to Alzheimer's disease, * Mild Alzheimer's Disease * Frontotemporal dementia (FTD) - Frontal variant * Frontotemporal dementia (FTD) - Primary progressive aphasia * Lewy Body dementia (LBD) * Vascular dementia 2. Ability to read, understand and express non opposition 3. Aged 50 years or older 4. Patient affiliated to the social security system Care partners: 1. Unpaid care partners for adults with Alzheimer's disease and related dementia ■ A care partner is the primary person who cares for an adult with ADRD, including but not limited to partner, spouse, family member, or significant other of the individual with ADRD. Care partners will be recruited where they care for patients with: * Mild dementia due to Alzheimer's disease (inclusive of Mild Cognitive Impairment (MCI), Prodromal Alzheimer's disease, Subjective cognitive impairment, Early onset dementia due to Alzheimer's disease, Mild Alzhiemer's Disease ) * Moderate to severe dementia due to Alzheimer's disease * Frontotemporal dementia (FTD) - Frontal variant * Frontotemporal dementia (FTD) - Primary progressive aphasia * Lewy Body dementia (LBD) * Vascular dementia 2. Delivers at least 10 hours of additional care per week since diagnosis 3. Ability to read, understand and express non opposition 4. Aged 18 years or older 5. Subject affiliated to the social security system Health-care practitioners 1. Healthcare practitioners actively treating adults with ADRD, including: neurologists, geriatricians, psychiatrists, neuropsychologists and social workers 2. Currently treats a minimum of 10 ADRD patients 3. express non opposition

Contact the study team to discuss eligibility requirements. They can help determine if this study is right for you.

Sponsors & Collaborators

• Centre Hospitalier Universitaire de Nice: lead

Study Sites (1)

chu de Nice

Nice, 06100, France

Location

MeSH Terms

Conditions

Alzheimer Disease

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 19, 2024
• First Posted: February 5, 2024
• Study Start: April 15, 2024
• Primary Completion: March 1, 2025
• Study Completion: March 1, 2025
• Last Updated: September 19, 2024

Record last verified: 2024-09

Locations

FR (1)