Franck Fajnkuchen1,2, Marie-Noëlle Delyfer3, John Conrath4, Stéphanie Baillif5, Sarah Mrejen2,6, Mayer Srour7, Jean-Paul Bellamy8, Benedicte Dupas9, Amélie Lecleire-Collet10, Cyril Meillon11, Pierre Bonicel12, Maria Hobeika13, Audrey Giocanti-Aurégan14. 1. Ophthalmology Department, Hôpital Avicenne and University Paris 13, Bobigny, Paris, France. 2. Centre d'Imagerie et de Laser, 11 rue Antoine Bourdelle, 75015, Paris, France. 3. Department of Ophthalmology, Centre Hospitalier Universitaire de Bordeaux, Bordeaux, France. 4. Centre Monticelli Paradis d'Ophtalmologie, Marseille, France. 5. Department of Ophthalmology, Saint Roch Hospital, Nice, France. 6. Department of Ophthalmology, XV-XX Ophthalmology National Hospital Center, Paris, France. 7. Department of Ophthalmology, Centre Hospitalier Intercommunal de Créteil, Université de Paris Est Créteil, Créteil, France. 8. HPCA, Plérin, France. 9. Ophthalmology Department, Hôpital Lariboisière, Université Paris 7, Paris, France. 10. Clinique Mathilde, Rouen, France. 11. Department of Ophthalmology, University Hospital, Dijon, France. 12. Department of Ophthalmology, Orléans Hospital, Orléans, France. 13. Laboratoire Novartis, Rueil-Malmaison, France. 14. Ophthalmology Department, Hôpital Avicenne and University Paris 13, Bobigny, Paris, France. audrey.giocanti@avc.aphp.fr.
Abstract
AIMS: Clinical outcomes of diabetic macular edema (DME) have been widely described, but data on diabetic retinopathy perceptions by diabetes patients are limited. The aim of this survey was to explore the lived experience, knowledge, fears and expectations about disease, and treatment in patients with diabetes and macular edema treated with intravitreal injections (IVTI) and to characterize patient profiles. METHODS: Cross-sectional survey including a preliminary qualitative phase (20 patients with DME, treated or treatment-naive, 5 female and 15 male, age 36-74 years) followed by a quantitative survey (116 patients treated with IVTI for DME). Data ASKIA Analyze (version 5.3.3.5) was used for descriptive statistics, and R software (version 3.4.1) for multiple correspondence analysis. RESULTS: The qualitative phase identified the wording used by patients and information helpful to propose modalities of response in the quantitative phase. In the quantitative survey (116 patients, mean age 66.6 years), most patients were treated with anti-vascular endothelial growth factor. Overall, 71.9% reported that the disease negatively affected their daily activities and 33.1% considered that regular visits to the ophthalmologist were disrupting their life. Treatment expectations differed significantly between patients in terms of disease experience (visit and injection schedules), fears and feelings, and relationship with physicians, allowing three patient profiles to be identified: "Worried" patients (n = 45) felt isolated and were worried about the need for repeated treatment and possible side effects. They were mainly active men aged < 60 with type I diabetes (T1D) and DME diagnosed for > 2 years; "Curious" patients (n = 21) experienced insufficient support and requested more information on their disease and existing treatments. They were mainly single women aged 60-69 years; "Passive" patients (n = 50) felt sufficiently informed by their ophthalmologist and were not concerned by DME. They were older (mean age: 70 years) and mainly type 2 diabetic men. CONCLUSIONS: Patients with diabetes and macular edema treated with IVTI form a heterogeneous group regarding fears and expectations. Different patient profiles were identified and need to be confirmed in larger studies. A better understanding of psychological profiles may optimize compliance of diabetic patients.
AIMS: Clinical outcomes of diabetic macular edema (DME) have been widely described, but data on diabetic retinopathy perceptions by diabetespatients are limited. The aim of this survey was to explore the lived experience, knowledge, fears and expectations about disease, and treatment in patients with diabetes and macular edema treated with intravitreal injections (IVTI) and to characterize patient profiles. METHODS: Cross-sectional survey including a preliminary qualitative phase (20 patients with DME, treated or treatment-naive, 5 female and 15 male, age 36-74 years) followed by a quantitative survey (116 patients treated with IVTI for DME). Data ASKIA Analyze (version 5.3.3.5) was used for descriptive statistics, and R software (version 3.4.1) for multiple correspondence analysis. RESULTS: The qualitative phase identified the wording used by patients and information helpful to propose modalities of response in the quantitative phase. In the quantitative survey (116 patients, mean age 66.6 years), most patients were treated with anti-vascular endothelial growth factor. Overall, 71.9% reported that the disease negatively affected their daily activities and 33.1% considered that regular visits to the ophthalmologist were disrupting their life. Treatment expectations differed significantly between patients in terms of disease experience (visit and injection schedules), fears and feelings, and relationship with physicians, allowing three patient profiles to be identified: "Worried" patients (n = 45) felt isolated and were worried about the need for repeated treatment and possible side effects. They were mainly active men aged < 60 with type I diabetes (T1D) and DME diagnosed for > 2 years; "Curious" patients (n = 21) experienced insufficient support and requested more information on their disease and existing treatments. They were mainly single women aged 60-69 years; "Passive" patients (n = 50) felt sufficiently informed by their ophthalmologist and were not concerned by DME. They were older (mean age: 70 years) and mainly type 2 diabeticmen. CONCLUSIONS:Patients with diabetes and macular edema treated with IVTI form a heterogeneous group regarding fears and expectations. Different patient profiles were identified and need to be confirmed in larger studies. A better understanding of psychological profiles may optimize compliance of diabeticpatients.