I Layat1, G Challe2, P LeHoang2, B Bodaghi2, V Touitou3. 1. Service d'intégration des enfants aveugles et malvoyants de Paris (SIAM 75), 88, avenue Denfert-Rochereau, 75014 Paris, France; Centre Daviel pour enfants plurihandicapés, 24, rue Daviel, 75013 Paris, France; Centre national de ressources handicap rare Robert-Laplane, 33, rue Daviel, 75013 Paris France. 2. Département d'ophtalmologie, DHU vision et handicaps, groupe hospitalier Pitié-Salpêtrière, 47-83, boulevard de l'Hôpital, 75013 Paris, France. 3. Département d'ophtalmologie, DHU vision et handicaps, groupe hospitalier Pitié-Salpêtrière, 47-83, boulevard de l'Hôpital, 75013 Paris, France. Electronic address: valerie.touitou@psl.aphp.fr.
Abstract
INTRODUCTION: Neuro-ophthalmologic conditions require specialized multidisciplinary management, both medical and surgical, for patients affected by visual loss due to nervous system disease. The primary goal of this study is to define the specificity of neuro-ophthalmology within the realm of visual health. The secondary goal is to review clinical care pathways by studying the organization of management, in terms of accessibility to care and personalization of the care pathway. PATIENTS AND METHODS: A field study was carried out from February to June 2015, within the ophthalmology service of the Pitié-Salpêtrière University Medical Center in Paris. A 30-minute interview with the patient before or after his or her neuro-ophthalmology consultation was performed, to describe the clinical care pathway. The medical records of interviewed patients were also analyzed. RESULTS: Seventeen care pathways (10 women and 7 men) were reviewed. The mean age at appearance of visual involvement was 44.5 years (±8.4 years). If we exclude 3 patients over 66 years and retired, 35.71% were active, 35.71% were disabled, and 28.57% were on sick leave. Ten patients (58.82%) met the criteria for admission to long-term care. The first step had been carried out by local private practitioners. The first physician seen was the general medicine physician (59%), then the private ophthalmologist on an emergency basis (17%). On average, patients went through 8 steps during their care pathway (from 6 to 10 steps) and 14 medical departments were involved. The study showed collaboration with the other services of the University Hospital Department of Vision and Disabilities (notably with the Fondation Rothschild, the Quinze-Vingts National Ophthalmology Hospital, and the Fondation Sainte-Marie). In addition to rehabilitation services, health care professionals participating in the outpatient care of the patients included an orthoptist (11.7%), a psychologist (11.7%), and an optician specializing in low vision for visual aids. Finally, patient support groups, AFM-Téléthon (myasthenia) and the ARIBa association (visual disability) were solicited by 2 patients for their involvement. A disturbance in activities of daily living leading to disabilities with psychological repercussions was noted by a number of patients. The most frequent complaints involve mobility (29.41%) and reading (23.52%). In total, 77% of patients state that their well-being has been affected, and they are disturbed by the progression of their disease. DISCUSSION AND CONCLUSIONS: The review of the clinical care pathway of patients affected by neuro-ophthalmological conditions shows that these pathologies are, on the one hand, often poorly understood, and on the other hand complex, leading to an often significant number of steps for the patient. This also emphasizes the necessity of a care network, specialized and structured to improve the efficiency of this management. Finally, these results demonstrate the existence of a very frequent disability, which may affect all aspects of the patients' lives, highlighting the importance of rehabilitation services and individuals participating in the follow-up of these patients beyond their acute care.
INTRODUCTION: Neuro-ophthalmologic conditions require specialized multidisciplinary management, both medical and surgical, for patients affected by visual loss due to nervous system disease. The primary goal of this study is to define the specificity of neuro-ophthalmology within the realm of visual health. The secondary goal is to review clinical care pathways by studying the organization of management, in terms of accessibility to care and personalization of the care pathway. PATIENTS AND METHODS: A field study was carried out from February to June 2015, within the ophthalmology service of the Pitié-Salpêtrière University Medical Center in Paris. A 30-minute interview with the patient before or after his or her neuro-ophthalmology consultation was performed, to describe the clinical care pathway. The medical records of interviewed patients were also analyzed. RESULTS: Seventeen care pathways (10 women and 7 men) were reviewed. The mean age at appearance of visual involvement was 44.5 years (±8.4 years). If we exclude 3 patients over 66 years and retired, 35.71% were active, 35.71% were disabled, and 28.57% were on sick leave. Ten patients (58.82%) met the criteria for admission to long-term care. The first step had been carried out by local private practitioners. The first physician seen was the general medicine physician (59%), then the private ophthalmologist on an emergency basis (17%). On average, patients went through 8 steps during their care pathway (from 6 to 10 steps) and 14 medical departments were involved. The study showed collaboration with the other services of the University Hospital Department of Vision and Disabilities (notably with the Fondation Rothschild, the Quinze-Vingts National Ophthalmology Hospital, and the Fondation Sainte-Marie). In addition to rehabilitation services, health care professionals participating in the outpatient care of the patients included an orthoptist (11.7%), a psychologist (11.7%), and an optician specializing in low vision for visual aids. Finally, patient support groups, AFM-Téléthon (myasthenia) and the ARIBa association (visual disability) were solicited by 2 patients for their involvement. A disturbance in activities of daily living leading to disabilities with psychological repercussions was noted by a number of patients. The most frequent complaints involve mobility (29.41%) and reading (23.52%). In total, 77% of patients state that their well-being has been affected, and they are disturbed by the progression of their disease. DISCUSSION AND CONCLUSIONS: The review of the clinical care pathway of patients affected by neuro-ophthalmological conditions shows that these pathologies are, on the one hand, often poorly understood, and on the other hand complex, leading to an often significant number of steps for the patient. This also emphasizes the necessity of a care network, specialized and structured to improve the efficiency of this management. Finally, these results demonstrate the existence of a very frequent disability, which may affect all aspects of the patients' lives, highlighting the importance of rehabilitation services and individuals participating in the follow-up of these patients beyond their acute care.