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Ocular Genetics Program: multidisciplinary care of patients with ocular genetic eye disease.

https://arctichealth.org/en/permalink/ahliterature161148
Source
Can J Ophthalmol. 2007 Oct;42(5):734-8
Publication Type
Article
Date
Oct-2007
Author
Yair Morad
Joanne Sutherland
Lisa DaSilva
Alissa Ulster
John Shik
Brenda Gallie
Elise Héon
Alex V Levin
Author Affiliation
Department of Ophthalmology and Vision Science, Hospital for Sick Children, University of Toronto, Ontario, Canada.
Source
Can J Ophthalmol. 2007 Oct;42(5):734-8
Date
Oct-2007
Language
English
Publication Type
Article
Keywords
Adolescent
Child
Eye Diseases, Hereditary - genetics
Genetic Counseling - methods
Humans
Ontario
Ophthalmology - methods
Patient satisfaction
Pilot Projects
Primary Health Care - methods
Program Evaluation - trends
Questionnaires
Referral and Consultation
Abstract
Patients who suffer from ocular genetic diseases have special needs in terms of diagnosis and management of rare entities, low-vision needs, genetic counselling, and psychosocial adjustments that are usually not addressed by an ophthalmologist alone. The Ocular Genetics Program (OGP) at the Hospital for Sick Children, Toronto, was established in 1994 to provide comprehensive, multidisciplinary care of patients with inherited eye disorders. We now assess the benefits of such a program and of integrating research into the care of patients.
We report our experience in developing a multidisciplinary ocular genetics program and the results of a pilot patient satisfaction survey that involved 61 patients.
The OGP multidisciplinary aspects are described. Of the 61 patients surveyed, 98% stated that they were satisfied with the OGP; 93%-96% of patients were content with "one day of appointments", "understanding of eye problem", and "coordination of ancillary tests such as visual fields test, electrophysiology, and others"; and for 70%-86% of respondents "waiting time to get an appointment", "information received on current research", and "primary health care provider adequately informed" were satisfactory.
The OGP is a unique service in Canada, which strives to provide the comprehensive care needed by ocular genetic patients. High patient satisfaction is an indicator of the success of this approach. Long waiting times for appointments and application of laboratory research in clinical care remain challenging.
PubMed ID
17891201 View in PubMed
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