PurposeGeneric instruments to assess health utilities can be used to express the burden of health problems in widely used indexes. That is in contrast with what can be obtained with condition-specific instruments, outcomes are very specific and difficult to compare across conditions. The purpose of this study was to assess health and visual outcomes and its determinants in patients with visual impairment (VI) using the EQ-5D-3L and the Activity-inventory (AI). MethodsParticipants were recruited in different hospitals during the PCVIP-study. A total of 134 patients with acuity 0.30 logMAR or less in the better eye were interviewed. The AI includes 46 goals split between three objectives: social functioning, recreation and daily living, was used to measure visual ability. The EQ-5D consists of five questions covering one domain each and was used to provide a measure of health states. Responses to each domain were combined to produce a single individual index.ResultsThe AI and the EQ-5D-3L showed enough discriminatory power between VI levels (p<.001) and their results were strongly correlated r(134)=.825, (p<.001). Explanatory factors for visual ability were level of VI in better eye, age and gender, R 2 =.43, (p<.001). Explanatory factors for the EQ-5D-3L were level of VI in the better eye, comorbidities and gender, R 2 =.36, (p<.001). ConclusionsOur results showed that the EQ-5D-3L is useful when characterizing the burden of VI and to compute, when necessary, quality-adjusted-life-years (QALY) changes due to VI. However, is important to consider that the EQ-5D-3L uses a coarse response scale, assesses a limited spectrum of domains and is influenced by comorbidities. This might limit its responsiveness to small changes in visual ability.

Purpose First, to evaluate inter-rater reliability when human raters estimate the reading performance of visually impaired individuals using the MNREAD acuity chart. Second, to evaluate the agreement between computer-based scoring algorithms and compare them with human rating. Methods Reading performance was measured for 101 individuals with low vision, using the Portuguese version of the MNREAD test. Seven raters estimated the maximum reading speed (MRS) and critical print size (CPS) of each individual MNREAD curve. MRS and CPS were also calculated automatically for each curve using two different algorithms: the original standard deviation method (SDev) and a non-linear mixed effects (NLME) modeling. Intra-class correlation coefficients (ICC) were used to estimate absolute agreement between raters and/or algorithms. Results Absolute agreement between raters was ‘excellent’ for MRS (ICC = 0.97; 95%CI [0.96, 0.98]) and ‘moderate’ to ‘good’ for CPS (ICC = 0.77; 95%CI [0.69, 0.83]). For CPS, inter-rater reliability was poorer among less experienced raters (ICC = 0.70; 95%CI [0.57, 0.80]) when compared to experienced ones (ICC = 0.82; 95%CI [0.76, 0.88]). Absolute agreement between the two algorithms was ‘excellent’ for MRS (ICC = 0.96; 95%CI [0.91, 0.98]). For CPS, the best possible agreement was found for CPS defined as the print size sustaining 80% of MRS (ICC = 0.77; 95%CI [0.68, 0.84]). Absolute agreement between raters and automated methods was ‘excellent’ for MRS (ICC = 0.96; 95% CI [0.88, 0.98] for SDev; ICC = 0.97; 95% CI [0.95, 0.98] for NLME). For CPS, absolute agreement between raters and SDev ranged from ‘poor’ to ‘good’ (ICC = 0.66; 95% CI [0.3, 0.80]), while agreement between raters and NLME was ‘good’ (ICC = 0.83; 95% CI [0.76, 0.88]). Conclusion For MRS, inter-rater reliability is excellent, even considering the possibility of noisy and/or incomplete data collected in low-vision individuals. For CPS, inter-rater reliability is lower. This may be problematic, for instance in the context of multisite investigations or follow-up examinations. The NLME method showed better agreement with the raters than the SDev method for both reading parameters. Setting up consensual guidelines to deal with ambiguous curves may help improve reliability. While the exact definition of CPS should be chosen on a case-by-case basis depending on the clinician or researcher’s motivations, evidence suggests that estimating CPS as the smallest print size sustaining about 80% of MRS would increase inter-rater reliability.

PurposeTo estimate and characterize the use of informal care by people with vision impairment in Portugal.MethodsA total of 546 visually impaired individuals were recruited from Portuguese hospitals. Clinical information was obtained from medical records, socio-demographic details and informal care use were collected during face-to-face interviews. In addition, participants responded to a functional vision questionnaire (activity inventory) to assess their visual ability. Logistic regression was used to determine independent factors associated with informal care use and linear regression was used to determine independent predictors of intensity of informal care use.ResultsInformal care was reported by 39.6% of the participants. The probability of reporting informal care was higher in non-married, those with comorbidities, with lower visual ability and worse visual acuity. The median number of caregivers’ hours per year was 390 (mean = 470; 95%CI = 488–407), which represent a median opportunity cost of €2,586. Visual ability was the only independent predictor of number of hours of informal care received.ConclusionsInformal care was frequently used by individuals with impaired vision. Improving visual ability of people with impaired vision when performing valued activities may reduce the burden of visual loss at personal and societal level. This could be achieved with person-centred visual rehabilitation.

Purpose: To investigate the cost-effectiveness of a basic vision rehabilitation service (basic-VRS) in Portugal. We designed a parallel group, randomised controlled trial whose aim is to compare the effects and costs of 'usual low vision care' with a 'basic-VRS intervention' on self-reported visual ability and other psychosocial and health-related quality-of-life outcomes. Methods: The trial will recruit participants that meet the following inclusion criteria: (1) visual acuity between 0.4-1.0 logMAR in the better-seeing eye, (2) cause of vision loss is diabetic retinopathy or age-related macular degeneration, (3) 18 years or older and iv) live in the community (not in nursing homes or other type of institution). Participants will be randomised to one of the study arms consisting of immediate intervention and delayed intervention. The delayed intervention group will receive 'usual care' or no intervention in the first 12 weeks. Visual acuity, contrast sensitivity and retinal structure will be assessed during the study. Results: The primary outcome measure is visual ability, which will be evaluated with the Massof Activity Inventory, we expect that the intervention will raise the overall person measure or visual ability. Reading, health-related quality-of-life, anxiety and depression and social support will be also assessed. The analysis will be undertaken on an intention-to-treat basis. A cost-effectiveness analysis will be performed to provide information about the cost per unit of utility. To evaluate the cost-effectiveness of the intervention we will adopt the perspective of the healthcare system. Conclusion: This study will provide additional evidence about the effects of basic-VRS on self-reported visual ability. Findings from this study should also contribute to better planning of low vision provision and, consequently, may contribute to reduce barriers to basic-VRS.

Objective: To investigate whether visual acuity has the same importance as a factor of depression and anxiety comparing with other psychological variables, particularly perceived social support, in patients diagnosed with age-related eye diseases, with and without low vision. Design: Observational cross-sectional study. Setting: Patients attending outpatient appointments at the department of ophthalmology of a general hospital in Portugal. Subjects: Patients with age-related macular degeneration and patients with diabetic retinopathy attending routine hospital appointments were recruited for this study. Measures: Anxiety and depression were measured using the hospital anxiety and depression scale and perceived social support using the multidimensional scale of perceived social support. Visual acuity was measured with ETDRS charts. Results: Of the 71 patients, 53 (75%) were diagnosed with diabetic retinopathy, 37 (52%) were female and age (mean ± SD) was 69 ± 12 years. Acuity in the better seeing eye was 0.41 ± 0.33 logMAR. The mean anxiety score was 4.38 ± 3.82 and depression 4.41 ± 3.39. Clinically significant levels of anxiety were found in 21% ( n = 15) of the participants and depression in 18%( n = 13). The total social support score was 5.29 ± 0.61. Significant multivariate regression models were found for anxiety ( R2 = 0.21, P = 0.016) and for depression ( R2 = 0.32, P < 0.0001). Social support was independently associated with levels of anxiety and with levels of depression. Gender was independently associated with levels of anxiety. Conclusion: This study suggests that patients’ perceived social support might be more important than visual acuity as a factor of clinical depression and anxiety in a sample of age-related eye disease patients.