To determine the quality of life (QOL) of patients with bilateral severe age-related macular degeneration (AMD) before macular translocation with 360 degrees peripheral retinectomy.
Prospective, consecutive, noncomparative case series.
An observational study assessed vision-related and general health QOL using the 25-item National Eye Institute Visual Function Questionnaire (NEI VFQ-25) and the Medical Outcomes Study 12-item short form (SF-12) surveys, respectively. Mean QOL scores were correlated with patient age, duration of vision loss, and visual function. Mean QOL scores in study patients were compared with mean QOL scores in groups of patients with low vision, patients with AMD of varying severity, and reference populations.
National Eye Institute VFQ-25 and SF-12 QOL scores.
Seventy patients with a mean age of 76.4 years were studied. Mean distance visual acuity (VA) was 62.4 (Early Treatment Diabetic Retinopathy Study letters), mean near VA was 0.81 (logarithm of the minimum angle of resolution), and mean reading speed was 74.9 words per minute. Important NEI VFQ-25 quality of vision subscales (general vision, difficulty with distance tasks, difficulty with near tasks) and vision-specific subscales (dependency, role difficulties, mental health, social function limitations) tended to correlate negatively with increasing patient age and duration of vision loss, but correlated positively with better VA and reading speed. The mean QOL scores for these important quality of vision and vision-specific subscales were significantly worse than or similar to mean scores in patients with low vision, and significantly worse than scores in patients with AMD of varying severity and a reference population. The mean SF-12 physical composite score in study patients was similar to that seen in patients with AMD of varying severity, but significantly higher than that in patients with low vision and a reference population. The SF-12 mental composite score in study patients was similar to those of all 3 comparison groups.
Patients with bilateral severe AMD have vision-related QOL similar to that of patients with low vision but significantly worse than those of patients with AMD of varying severity and persons without eye disease. This inability to perform vision-related daily tasks is not related to general health problems.
"The VFQ-25 has been used to measure VR-QoL in several chronic ocular diseases, such as glaucoma, keratoconus, adult macular degeneration , uveitis and DME (Aydin Kurna et al., 2014; Cahill, Banks, Stinnett, & Toth, 2005; Freedman et al., 2014; Jivraj, Jivraj, Tennant, & Rudnisky, 2013; Kaleemunnisha et al., 2014; Lightman et al., 2013; Miskala et al., 2004; Sakai et al., 2013). The RESTORE trial (Mitchell et al., 2013) is the first to assess the impact of ranibizumab treatment on health related quality of life (HR-QoL) using the VFQ-25. "
"Central, high acuity vision is often compromised in patients with AMD, with peripheral vision typically being preserved. The loss of central vision associated with AMD profoundly impacts upon the ability to perform activities such as reading, writing, driving and recognising faces (Berdeaux, Nordmann, Colin, & Arnould, 2005; Cahill et al., 2005). Vision loss such as this can preclude healthy and independent ageing, and contribute to a reduction in quality of life (Hassell et al., 2006; Mitchell & Bradley, 2006). "
[Show abstract][Hide abstract] ABSTRACT: Current therapy to slow disease progression in patients with neovascular age-related macular degeneration (AMD) often entails intra-vitreal injection of an anti-vascular endothelial growth factor (VEGF) agent, that begins with a three-month loading phase of four weekly injections followed by regular monthly visits with clinician-determined re-treatment. The effects of AMD on quality of life and visual function have been extensively reported in the literature, however, less is known about the burden imposed on patients by the arduous and often indefinite treatment schedule which habitually follows a diagnosis of wet AMD. To date, no systematic review has been conducted of research investigating patients' experiences of anti-VEGF treatment for AMD. A systematic search of the Embase, Medline, PsycINFO and PubMed electronic databases was undertaken to identify all studies between January 2004 and December 2013, published in the English language and involving human participants. A hand-search of an additional four journals was conducted. Ten articles were identified for inclusion in this review. A critical appraisal was undertaken using the Critical Appraisal Skills Programme Qualitative Research Checklist and the results synthesised to form a narrative review. Few studies to date have investigated patients' experiences of treatment for AMD. These studies have focused primarily on patients' experiences of the injection procedure with respect to pain and anxiety. Anticipated discomfort is often greater than actual discomfort experienced during intra-vitreal injection. However, different stages of the treatment procedure produce varying levels of patient discomfort. No one method of anaesthesia has consistently been shown to be more effective in reducing discomfort associated with treatment. Common reasons underlying patient apprehension surrounding treatment include the thought of having an injection, fear of losing eyesight and fear of the unknown. Whilst these studies have not been without their methodological limitations, they provide a platform for further exploration of the patient experience.
Psychology Health and Medicine 08/2014; In Print(3). DOI:10.1080/13548506.2014.936886 · 1.26 Impact Factor
"To assess these limitations comprehensively the patient perspective has to be taken into account. In ophthalmology traditional objective clinical measures, such as best corrected visual acuity (BCVA), are being complemented by the assessment of patients’ perception of their visual function, functioning in general and quality of life
. Generic patient-reported outcome measures, such as the Medical Outcome Study Short Form 36 (SF-36)
, EuroQoL-5D (EQ-5D)
, utility values, such as the time trade-off and standard gamble, and condition-specific patient-reported outcome measures, like the Visual Function 14-item Scale (VF-14)
 and the Activities of Daily Vision Scale (ADVS)
, the Daily Living Tasks Dependent on Vision (DLTV)
 and the National Eye Institute Visual Function Questionnaire (NEI VFQ)
, have been used to address functioning and quality of life in PVI
[Show abstract][Hide abstract] ABSTRACT: Background
Visual impairment is associated with important limitations in functioning. The International Classification of Functioning, Disability and Health (ICF) adopted by the World Health Organisation (WHO) relies on a globally accepted framework for classifying problems in functioning and the influence of contextual factors. Its comprehensive perspective, including biological, individual and social aspects of health, enables the ICF to describe the whole health experience of persons with visual impairment. The objectives of this study are (1) to analyze whether the ICF can be used to comprehensively describe the problems in functioning of persons with visual impairment and the environmental factors that influence their lives and (2) to select the ICF categories that best capture self-perceived health of persons with visual impairment.
Data from 105 persons with visual impairment were collected, including socio-demographic data, vision-related data, the Extended ICF Checklist and the visual analogue scale of the EuroQoL-5D, to assess self-perceived health. Descriptive statistics and a Group Lasso regression were performed. The main outcome measures were functioning defined as impairments in Body functions and Body structures, limitations in Activities and restrictions in Participation, influencing Environmental factors and self-perceived health.
In total, 120 ICF categories covering a broad range of Body functions, Body structures, aspects of Activities and Participation and Environmental factors were identified. Thirteen ICF categories that best capture self-perceived health were selected based on the Group Lasso regression. While Activities-and-Participation categories were selected most frequently, the greatest impact on self-perceived health was found in Body-functions categories. The ICF can be used as a framework to comprehensively describe the problems of persons with visual impairment and the Environmental factors which influence their lives.
There are plenty of ICF categories, Environmental-factors categories in particular, which are relevant to persons with visual impairment, but have hardly ever been taken into consideration in literature and visual impairment-specific patient-reported outcome measures.
Health and Quality of Life Outcomes 05/2014; 12(1):65. DOI:10.1186/1477-7525-12-65 · 2.12 Impact Factor
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