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Quality of Life and Life Satisfaction in Young Adults with Primary Congenital Glaucoma

PurposeLittle is known about quality of life (QoL) and life satisfaction (LS) of treated primary congenital glaucoma (PCG) patients in adulthood. The purpose of this study was to assess the QoL and LS and their predictors among young adults treated for PCG during early childhood.DesignCross-sectional study.ParticipantsEighty-two participants with PCG (mean age, 22.5 years; standard deviation [SD], 4.6); 52% were male; 94% bilateral) recruited at L V Prasad Eye Institute.MethodsParticipants were asked to complete the 26-item World Health Organization Quality of Life–BREF (WHOQOL-BREF) questionnaire (items related to satisfaction with general health, physical, psychological, social relations, and environmental aspects) and the 5-item Satisfaction with Life Scale (SWLS) in the clinic visit. Clinical data including visual acuity (VA) and visual fields (VFs) were collated from medical records. Rasch analysis was used to optimize the psychometric properties, with higher scores indicating a higher degree of QoL and LS, for both the questionnaires. Linear regression models were used to examine associations between overall QoL and LS (in separate models), and sociodemographic and clinical variables.Main Outcome MeasuresThe QoL and LS were measured using Rasch-transformed scores from the WHOQOL-BREF questionnaire and SWLS, respectively.ResultsResponse rate was 93%. The overall mean (SD) Rasch-scaled scores for QoL were 0.93 (1.11) and 0.87 (1.32) for environment domain and 0.41 (1.56) logits for LS. Better QoL was significantly related to rural residence and higher education in both univariable and multivariable analyses and explained 13% variance. Higher LS was significantly related to marital status, unilateral affliction, and higher education in univariable analyses. However, multivariable regression analysis showed that only marital status was independently associated with higher LS and explained 8.8% of variance. Clinical and treatment variables (VF, surgical interventions, medications) were not independent predictors of QoL/LS.ConclusionsOur results suggest that QoL and LS of treated patients with PCG during adult life are generally good and appear to be driven by factors other than clinical indices. Educational achievement appears to be linked to better QoL and LS, and clinicians should emphasize the importance and need for education in the continued care of these patients.

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