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S. M. Alexander, M. Napier, J. O'Neill, G. Young, D. Simpson, G. Silvestri; Review of Utilization of Support Services for Patients With Retinitis Pigmentosa in Northern Ireland. Invest. Ophthalmol. Vis. Sci. 2009;50(13):973.
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© ARVO (1962-2015); The Authors (2016-present)
Our group has recently collated the Northern Ireland Retinitis Pigmentosa (RP) database with a view to developing comprehensive genotypic-phenotypic data on this population. The purpose of this study is to assess if existing Support Services for patients with RP are being accessed by patients and if the services provided meet their needs and expectations.
A Questionnaire was devised, consisting of 27 questions relating to several aspects important to this patient group:. Patient awareness of Retinitis Pigmentosa• Low Vision• Employment• Improving Social Living• Support ServicesA previous Questionnaire-based assessment had been carried out on fifty patients who were Visually Impaired, in September 2005. Six questions were repeated again in the new Questionnaire. The patients were selected at random from the database. Each Questionnaire was completed by telephoning the patient and verbally reading the questions, and answers were documented manually and then transferred to an excel spreadsheet for analysis.
Looking at each question area separately the results are as follows. In the "Low Vision" section 90% of respondents were registered blind and 10% partially sighted. In terms of employment, 80% are unemployed, and 20% employed. Of those unemployed, 25% patients lost their job as a direct result of having R.P. In the "Improving Social Living" section, 80% had the ongoing support of a Social Worker from the Sensory Impaired Team, and the remaining 20%, knew how to access a Social Worker if required. Regarding "Support Services", 50% made good use of all that was available. The remaining 50% felt that they had sufficient support from their family circle. In view of our current research projects which address the genetic analysis of the RP population we were especially keen to find out the level of awareness in this population regarding the possibility of gene therapy for RP. Only 25% were aware, while the remaining 75% were unaware.
In conclusion, in general the results indicate that a high proportion of the patients with RP, are satisfied with the existing holistic Support Services they receive. A small number of patients felt that there may be some deficiencies in services available to the visually impaired in Northern Ireland. We plan to use this information to inform the new Eye Care Liaison Officers (ECLO) support service which has recently been set up in Northern Ireland.
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