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

University of Limoges (UL)

Status: Unknown

Conditions: Age-related Macular Degeneration (AMD)

Treatments: Behavioral: Interviews

Study type: Interventional

Funder types: Other

Identifiers

NCT03690505

I16027/DEMELE

Details and patient eligibility

About

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:

1. 200 patients will be enrolled and answer a questionnaire on knowledge of the disease
2. Two groups of 20 patients will be selected to participate to a semi-structured individual interviews
3. Two focus groups of 10 patients will be organized to assess needs, expectations, satisfactions or to better understand opinions, motivations or behaviors.

Enrollment: 200 estimated patients

Sex: All

Ages: 50+ months old

Volunteers: No Healthy Volunteers

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

Trial design

Primary purpose: Supportive Care

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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200 participants in 1 patient group

Assessment

Other group

Description:

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

Treatment:

Behavioral: Interviews