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


METHODS
We report our experience in developing a multidisciplinary ocular genetics program and the results of a pilot patient satisfaction survey that involved 61 patients.


RESULTS
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.


CONCLUSIONS
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.
Morad
Yair
Y
Department of Ophthalmology and Vision Science, Hospital for Sick Children, University of Toronto, Ontario, Canada.
Sutherland
Joanne
J
DaSilva
Lisa
L
Ulster
Alissa
A
Shik
John
J
Gallie
Brenda
B
Héon
Elise
E
Levin
Alex V
AV
D000293:Adolescent; D002648:Child; D015785:Eye Diseases, Hereditary / Q000235:genetics*; D005817:Genetic Counseling / Q000379:methods*; D006801:Humans; D009864:Ontario; D009885:Ophthalmology / Q000379:methods*; D017060:Patient Satisfaction; D010865:Pilot Projects; D011320:Primary Health Care / Q000379:methods*; D015397:Program Evaluation / Q000639:trends*; D012017:Referral and Consultation; D011795:Surveys and Questionnaires