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视网膜色素变性对年轻成年人生活质量、心理健康和就业的影响。

Impact of Retinitis Pigmentosa on Quality of Life, Mental Health, and Employment Among Young Adults.

作者信息

Chaumet-Riffaud Anne Elisabeth, Chaumet-Riffaud Philippe, Cariou Anaelle, Devisme Céline, Audo Isabelle, Sahel José-Alain, Mohand-Said Saddek

机构信息

CHNO des Quinze-Vingts, DHU Sight Restore, INSERM-DGOS CIC 1423, Paris, France.

Service de Biophysique et Médecine nucléaire, Hôpitaux universitaires Paris Sud, Bicêtre APHP Univ Paris Sud, Le Kremlin Bicêtre, France.

出版信息

Am J Ophthalmol. 2017 May;177:169-174. doi: 10.1016/j.ajo.2017.02.016. Epub 2017 Feb 22.

Abstract

PURPOSE

To determine the relationship between visual function and quality of life, education, mental health, and employment among young adults with retinitis pigmentosa (RP).

DESIGN

Cross-sectional study.

METHODS

Inclusion of 148 patients (mean age 38.2 ± 7.1 years) diagnosed with RP, living in France. Quality of life was assessed using the National Eye Institute Visual Function Questionnaire (VFQ-25), mental state with the Hospital and Anxiety and Depression Scale (HADS), and employment with a specifically designed questionnaire.

RESULTS

Limited visual impairment was noted in 22.3%, low vision in 29.7%, and legal blindness in 48.0%. There was a correlation between quality-of-life scores and residual visual field (P < .0001). Mental health scores were suggestive of anxiety in 36.5% and depression in 15.5%. The rates did not increase with disability level (P = .738, P = .134). The percentage of subjects with higher education did not significantly decrease with disability level (P = .113). The employment rate did not significantly decrease with disability level (P = .276). It was lower in subjects reporting depression (P = .0414). Self-rated impact of RP on employment increased with disability level (P = .02642).

CONCLUSIONS

Our results differ from previous results showing lower education rates and employment rates in young adults with RP. Further research is warranted focusing on the impact of mental health, education, workplace conditions, and employment aids on employment rate vs age- and education-matched normally sighted controls to guide visual disability strategies in RP.

摘要

目的

确定患有视网膜色素变性(RP)的年轻人的视觉功能与生活质量、教育、心理健康和就业之间的关系。

设计

横断面研究。

方法

纳入148名居住在法国、被诊断患有RP的患者(平均年龄38.2±7.1岁)。使用美国国立眼科研究所视觉功能问卷(VFQ - 25)评估生活质量,使用医院焦虑抑郁量表(HADS)评估精神状态,并通过专门设计的问卷评估就业情况。

结果

22.3%的患者存在轻度视力损害,29.7%为低视力,48.0%为法定失明。生活质量得分与残余视野之间存在相关性(P <.0001)。心理健康得分显示36.5%的患者有焦虑,15.5%有抑郁。这些比例并未随残疾程度增加(P =.738,P =.134)。高等教育程度受试者的比例并未随残疾程度显著降低(P =.113)。就业率并未随残疾程度显著降低(P =.276)。报告有抑郁的受试者就业率较低(P =.0414)。RP对就业的自评影响随残疾程度增加(P =.02642)。

结论

我们的结果与之前显示RP年轻患者教育率和就业率较低的结果不同。有必要进一步研究心理健康、教育、工作场所条件和就业辅助工具对就业率的影响,并与年龄和教育程度匹配的正常视力对照组进行比较,以指导RP患者的视觉残疾策略。

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