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      Threshold Levels of Visual Field and Acuity Loss Related to Significant Decreases in the Quality of Life and Emotional States of Patients with Retinitis Pigmentosa

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          Introduction: Retinitis pigmentosa (RP) is an inherited retinal disorder, characterized by photoreceptor degeneration inducing progressive vision loss. This study evaluates its impact on quality of life (QOL) and emotional states of patients affected by RP. Methods: A cross-sectional study was conducted on 60 RP patients diagnosed with rod-cone dystrophy and on 20 control subjects. The RP population has been divided into 3 groups according to visual field (VF) and visual acuity (VA) impairments. Concurrently, scores of self-reported QOL (25-item National Eye Institute Visual Functioning Questionnaire) and of the Hospital Anxiety and Depression Scale for anxiety/depression assessments were collected. Results: For the QOL composite score, we noticed consistent differences between all VF and VA affected groups and their control group. We also found significant differences between both the most affected VF group (VF1: ØVF <20°) and VA group (VA1: VA <0.3) compared to other VF and VA groups. For anxiety/depression scores, consistent differences have been found between the control group and VF1 and VA1, respectively. Conclusions: This work determines that, for RP patients, a significant QOL and emotional state deterioration correlates with a residual VF diameter below 20° and a VA lower than 0.3. It introduces, for the first time, thresholds to be used in visual restoration or visual preservation therapies to improve QOL of RP patients.

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          Most cited references 29

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          International experiences with the Hospital Anxiety and Depression Scale-A review of validation data and clinical results

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            Prevalence of retinitis pigmentosa in Maine.

            Between 1976 and 1980, medical and social service sources were used to ascertain cases of retinitis pigmentosa in Maine (1980 population, I, 124,660). As of July 1, 1980, 241 clinically prevalent cases of retinitis pigmentosa were ascertained. Extensive pedigrees were collected for 185 of the subjects and medical records were obtained. One hundred fourteen cases were further evaluated by clinical examination including electroretinography. Adjusting for incorrect diagnosis (eight of 114, 7%) and underascertainment (23 of 185, 12.5%), we estimated that prevalence of retinitis pigmentosa in Maine is 236 cases, 21 per 100,000 population or 1:4,756. Excluding Usher and Bardet-Biedl syndromes, the prevalence is 1:5,193. Estimated birth incidence of persons who will become affected with non-syndrome retinitis pigmentosa is 1:3,544. Incidence of newly diagnosed cases per year is about six per 1,000,000 population. Among kindreds, 16 of 85 (19%) were autosomal dominant, 55 of 85 (65%) autosomal recessive or isolated cases, seven of 85 (8%) X-linked recessive, and seven of 85 (8%) not classified by mode of transmission.
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              Natural course of retinitis pigmentosa over a three-year interval.

              Ninety-four patients, 6 to 49 years old, with progressive forms of retinitis pigmentosa were examined at baseline and annually for three consecutive years with respect to visual acuity, kinetic visual fields, dark-adaptation thresholds, computer-averaged electroretinograms, and fundus photographs. A subset was recalled within two months of a given visit to measure intervisit variability and to develop criteria for what constitutes significant (P less than .01) functional change. Over a three-year interval full-field electroretinograms declined significantly in 66 of 86 patients (77%) with detectable responses at baseline. Patients lost an average of 16% to 18.5% of remaining electroretinographic amplitude per year and 4.6% of remaining visual field area per year. Bone spicule pigmentation increased in 41 of 76 patients for whom we could make comparisons over a three-year interval (54%). Visual acuity and dark-adaptation thresholds remained relatively stable.

                Author and article information

                Ophthalmic Res
                Ophthalmic Research
                S. Karger AG
                September 2015
                29 July 2015
                : 54
                : 2
                : 78-84
                aCentre Hospitalier National d'Ophtalmologie des Quinze-Vingts, DHU ViewMaintain, INSERM-DHOS CIC 1423, bCentre Hospitalier de Bicêtre, Assistance Publique-Hôpitaux de Paris, Université Paris Sud-11, cINSERM U968, and dInstitut de la Vision, Sorbonne Universités, UPMC Université Paris-06, UMR_S 968, Paris, France
                Author notes
                *Saddek Mohand-Saïd, CHNO des Quinze-Vingts, Inserm CIC 1423, 28 rue de Charenton, FR-75012 Paris (France), E-Mail smohand-said@quinze-vingts.fr
                435886 Ophthalmic Res 2015;54:78-84
                © 2015 S. Karger AG, Basel

                Open Access License: This is an Open Access article licensed under the terms of the Creative Commons Attribution-NonCommercial 3.0 Unported license (CC BY-NC) ( http://www.karger.com/OA-license), applicable to the online version of the article only. Distribution permitted for non-commercial purposes only. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

                Page count
                Figures: 2, Tables: 5, References: 41, Pages: 7
                Original Paper


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