DEMELE: Assessment of the Knowledge and Needs of Patients With AMD Before a Therapeutic Patient Education Program is Put in Place
Study Details
Study Description
Brief Summary
Age-related macular degeneration (AMD) is a disease that blurs the sharp, central vision you need for "straight-ahead" activities such as reading, sewing, and driving. AMD affects the macula, the part of the eye that allows you to see fine detail
The purpose of the study is to describe in patients with AMD and depending on the nature of their pathology (neovascular or atrophic):
(i) knowledge about their pathology (risk factors, symptoms, treatments, self-monitoring tool), (ii) their needs and (iii) impact on their daily lives
This study is to make an inventory of the knowledge of patients with AMD about their disease and risk factors using a questionnaire (Appendix 1) and to identify their needs, the impact of the disease on their daily lives during individual interviews by raising the recurrent data and confronting them during the focus group. The information gathered will enable the construction of a therapeutic education program for better patient care and to strengthen the patient's capacities so that he becomes an actor in his change throughout his care project.
This a 3 steps study:
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200 patients will be enrolled and answer a questionnaire on knowledge of the disease
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Two groups of 20 patients will be selected to participate to a semi-structured individual interviews
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Two focus groups of 10 patients will be organized to assess needs, expectations, satisfactions or to better understand opinions, motivations or behaviors.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
|
N/A |
Study Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| Other: Assessment Assessment of the Knowledge and Needs of Patients With AMD Before a Therapeutic Patient Education Program is Put in Place |
Behavioral: Interviews
informant-based questionnaire semi-structured individual interviews focus group interviews
|
Outcome Measures
Primary Outcome Measures
- Knowledge of AMD [throughout the study, 2 years at maximum]
Assesment concern patients knowledge of AMD disease, the treatment of AMD, the diagnostic of AMD and the knowledge on the AMD risk factors A 12 items standardised questionnaire will be used
- Social vulnerability [throughout the study, 2 years at maximum]
Assessed by EPICES scale (Evaluation of Precariousness and Health Inequalities in the Health Examination Centers). It is an individual indicator of precariousness that takes into account the multidimensional nature of precariousness. Compsed of 11 items . 4 unfavorable answers indicate a Social vulnerability
Secondary Outcome Measures
- Health literacy. [throughout the study, 2 years at maximum]
Assessed by the Health Literacy Questionnaire (HLQ) scale. It has nine scales that each measure an aspect of the multidimensional construct of health literacy. Higher scores assess for an good health literacy
Eligibility Criteria
Criteria
Inclusion Criteria:
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Patient with AMD (neovascular and atrophic) whatever the stage of the disease
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Patient over 50
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Patient affiliated to a social security scheme
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Written informed consent of the patient
Exclusion Criteria:
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Patient unable to understand the information, fill out the questionnaires
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Patient with diabetic retinopathy
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | Service d'Ophtalmologie | Limoges | France | 87042 |
Sponsors and Collaborators
- University Hospital, Limoges
Investigators
None specified.Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- I16027/DEMELE