Assessment of the Knowledge and Needs of Patients With AMD Before a Therapeutic Patient Education Program is Put in Place

Study Overview
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Brief Summary
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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: 200 patients will be enrolled and answer a questionnaire on knowledge of the disease Two groups of 20 patients will be selected to participate to a semi-structured individual interviews Two focus groups of 10 patients will be organized to assess needs, expectations, satisfactions or to better understand opinions, motivations or behaviors.

Official Title
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Assessment of the Knowledge and Needs of Patients With AMD Before a Therapeutic Patient Education Program is Put in Place

Conditions
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Age-related Macular Degeneration (AMD)

Intervention / Treatment
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* Behavioral: Interviews


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Patient with AMD (neovascular and atrophic) whatever the stage of the disease Patient over 50 Patient affiliated to a social security scheme Written informed consent of the patient Exclusion Criteria: Patient unable to understand the information, fill out the questionnaires Patient with diabetic retinopathy

Ages Eligible for Study
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Minimum Age: 50 Months

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Other: Assessment<br>Assessment of the Knowledge and Needs of Patients With AMD Before a Therapeutic Patient Education Program is Put in Place | Behavioral: Interviews<br>* informant-based questionnaire semi-structured individual interviews focus group interviews<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Knowledge of AMD | 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 | throughout the study, 2 years at maximum | 
| Social vulnerability | 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 | throughout the study, 2 years at maximum | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Health literacy. | 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 | throughout the study, 2 years at maximum |