Bilan 13/30

In 1989, in Nîmes, the CHU Carémeau and the Association Réinsertion Aveugles Malvoyants (ARAMAV) initiated an innovative treatment method for patients with severe visual impairment. Within the ARAMAV clinic, which currently includes 20 full hospital beds and 8 day hospital beds, patients benefit from low vision rehabilitation thanks to a multidisciplinary rehabilitation team including ophthalmologists, orthoptists, occupational therapists, locomotion instructors and psychomotor therapists. A clinical evaluation allows an individualized therapeutic plan adapted to the residual visual potential of the patients. The principle is to combine a program for optimizing visual function with work on the compensatory senses.

However, although the results of rehabilitation are convincing, with a significant improvement in patients' autonomy (reported by the patients themselves, their entourage and the rehabilitators taking care of their care), a tool was missing. specific evaluation, dedicated to patients with visual impairment. This should make it possible to quantify the levels of autonomy and quality of life at different stages of care in order to objectify and quantify the progress made but also to develop and adapt rehabilitation programs. WHO describes quality of life as “being an individual's perception of his position in life, in the cultural context and value system in which he lives, in relation to his goals, expectations, role models and his interests ". The Food and Drug Administration (FDA) and the European Medicines Agency recommend using Patient Reported Outcome Measures (PROMs) for the evaluation of new drugs or treatments. A PROM is a list of questions that assess patient health information from their own perspective. These questionnaires are increasingly used in clinical studies to assess the impact of a treatment seen by the patient himself. The assessment of quality of life is carried out using questionnaires exploring various items that can be grouped into dimensions ... This assessment by the patient is becoming increasingly important in the field of ophthalmology. There are many randomized clinical trials in which the results of a quality of life questionnaire are the primary endpoint. This subjective assessment is very interesting because for the same clinical effect (intraocular pressure, central macular thickness in OCT, visual acuity, etc.), it is possible to identify differences between two treatments. The generic quality of life questionnaires currently used are poorly suited to visually impaired subjects with specific issues. It therefore seemed relevant to us to propose a new tool for evaluating autonomy and general quality of life adapted to the visually impaired subject and sensitive to rehabilitation care. The 13/30 ARAMAV assessment was validated by a prospective single-center clinical study. We included 231 patients in total for a total duration of 44 months. Our results validated the 13/30 ARAMAV assessment as a scale of quality of life and autonomy in visually impaired patients regardless of the cause. It is a multidimensional, reliable, consistent and structured scale that exhibits good sensitivity to change. It can be considered as a new tool for the assessment of the visually impaired patient. It seems interesting to us to integrate the 13/30 ARAMAV assessment into any low vision orthoptic assessment in order to accurately assess the degree of autonomy and quality of life of visually impaired patients and to offer "tailor-made" care.