Evaluation of vision-specific quality-of-life in albinism

Beth R Kutzbach; Kimberly S Merrill; Kathy M Hogue; Sara J Downes; Ann M Holleschau; John T MacDonald; C Gail Summers

doi:10.1016/j.jaapos.2008.10.008

Back

Evaluation of vision-specific quality-of-life in albinism

Journal article

Peer reviewed

Evaluation of vision-specific quality-of-life in albinism

Beth R Kutzbach, Kimberly S Merrill, Kathy M Hogue, Sara J Downes, Ann M Holleschau, John T MacDonald and C Gail Summers

Journal of AAPOS, Vol.13(2), pp.191-195

04/2009

DOI: 10.1016/j.jaapos.2008.10.008

PMID: 19157938

View Online

Abstract

Human albinism is a genetic condition associated with visual impairment that affects many aspects of daily life. Office measurements of visual acuity do not necessarily reflect daily visual function and health status. This study used the National Eye Institute Visual Function Questionnaire (NEI-VFQ) to determine the effect of albinism-associated ophthalmopathy on quality of life (QOL). We administered the NEI-VFQ, which consists of 25 questions about QOL (VFQ-25) and 14 questions about well-being (VFQ-39), to 44 consenting participants with albinism older than the age of 18 years. Nineteen male and 25 female subjects completed the study. Median age was 30.5 years (range, 18-79 years). Mean best-corrected visual acuity was 20/83 (range, 20/20 to 20/320). Forty-eight percent reported that they were currently able to drive with their condition. Participants perceived midscale problems with their general vision (median subscale score 60.0). Visual acuity correlated moderately with overall NEI-VFQ composite scores (r(s) = 0.40, p = 0.01 for VFQ-25 and r(s) = 0.36, p = 0.02 for VFQ-39). Most notable impairment was recorded for distance acuity, vision-specific mental health, and vision-specific role difficulties (VFQ-39 median subscale scores 66.7, 70.0, and 75.0, respectively). Differences by sex were insignificant. Greater ceiling effects were noted for the VFQ-25 than for the VFQ-39. The NEI-VFQ-39 is a method to evaluate self-reported effects of vision-related QOL in albinism and may be used as a baseline for evaluating outcomes in interventional studies in these patients.

Albinism - physiopathology

Comorbidity

Humans

Middle Aged

Vision Disorders - psychology

Male

Activities of Daily Living

Young Adult

Vision Disorders - physiopathology

Social Behavior

Adolescent

Quality of Life

Adult

Female

Surveys and Questionnaires

Aged

Vision Disorders - epidemiology

Health Status

Albinism - psychology

Mental Health - statistics & numerical data

Albinism - epidemiology

Details

Title: Subtitle: Evaluation of vision-specific quality-of-life in albinism
Creators: Beth R Kutzbach - Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota 55455, USA
Kimberly S Merrill
Kathy M Hogue
Sara J Downes
Ann M Holleschau
John T MacDonald
C Gail Summers
Resource Type: Journal article
Publication Details: Journal of AAPOS, Vol.13(2), pp.191-195
DOI: 10.1016/j.jaapos.2008.10.008
PMID: 19157938
NLM abbreviation: J AAPOS
ISSN: 1091-8531
eISSN: 1528-3933
Publisher: Elsevier Inc
Language: English
Date published: 04/2009
Academic Unit: Ophthalmology and Visual Sciences
Record Identifier: 9984111209802771

Metrics

18 Record Views

16 Times Cited - Web of Science