Meaningful Aspects of Health for Adults With Dementia, Their Care Partners and Healthcare Practitioners
- Conditions
- Alzheimer Disease
- Interventions
- Other: Survey
- Registration Number
- NCT06242574
- Lead Sponsor
- Centre Hospitalier Universitaire de Nice
- 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.
- Detailed Description
Alzheimer's disease and related disorders (ADRD) are the sixth leading cause of death among adults. Currently, more than 55 million people worldwide are living with the disease, with nearly 10 million new cases each year. ADRD causes significant economic and care burdens for thousands of families and their communities, with over 60% of caregivers developing depressive symptoms. ADRD is ranked among the most costly diseases for society . It is therefore necessary to intervene in order to combat this devastating disease. As recent guidance from the Food and Drug Administration indicates, there is a need to identify areas and mechanisms for real-world change to improve patients' quality of life.
The European Medicines Agency Expert Advisory Group concluded that there was no consensus on validated outcomes in early-stage ADRD and identified the need to fill these gaps.
To demonstrate the utility of any clinical outcome assessment, it's important to link these measures to real-world experiences. And to create this link, research is needed to better understand the meaningful aspects of the health of Alzheimer's patients and their caregivers. In addition, it is important to understand how these MAHs relate to clinicians' perspectives and their approach to assessing disease severity.
Thus, 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.
Participants with Alzheimer's disease and related dementia and caregivers will be recruited through the Memory Clinic at the Geriatric Hospital in Nice.
Healthcare practitioners working at Centre de Mémoire de Ressources et de Recherche, or outside the Centre , and actively treating a minimum of 10 adults with ADRD, including: neurologists, geriatricians, psychiatrists, neuropsychologists and social workers will be proposed to participate.
All participants will be given a web link to access the survey and will complete it remotely. The survey will take approximately 30 minutes to complete.
Recruitment & Eligibility
- Status
- NOT_YET_RECRUITING
- Sex
- All
- Target Recruitment
- 175
Not provided
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description Clinicians who treat patients with Alzheimer's disease and related dementia Survey 25 healthcare practitioners Care partners of Adults with Alzheimer's disease and related dementia Survey 75 care partners for adults with ADRD Adults with Alzheimer's disease and related dementia Survey 75 patients with ADRD
- Primary Outcome Measures
Name Time Method 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 day 1 questionnaire specially developed for the study containing a set of MAH ranking exercises and free text response questions
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 day1 questionnaire specially developed for the study containing a set of MAH ranking exercises and free text response questions
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
chu de Nice
🇫🇷Nice, France