Global estimates on the number of people blind or visually impaired by cataract: a meta-analysis from 2000 to 2020.

BACKGROUND: To estimate global and regional trends from 2000 to 2020 of the number of persons visually impaired by cataract and their proportion of the total number of vision-impaired individuals. METHODS: A systematic review and meta-analysis of published population studies and gray literature from 2000 to 2020 was carried out to estimate global and regional trends. We developed prevalence estimates based on modeled distance visual impairment and blindness due to cataract, producing location-, year-, age-, and sex-specific estimates of moderate to severe vision impairment (MSVI presenting visual acuity <6/18, ≥3/60) and blindness (presenting visual acuity <3/60). Estimates are age-standardized using the GBD standard population. RESULTS: In 2020, among overall (all ages) 43.3 million blind and 295 million with MSVI, 17.0 million (39.6%) people were blind and 83.5 million (28.3%) had MSVI due to cataract blind 60% female, MSVI 59% female. From 1990 to 2020, the count of persons blind (MSVI) due to cataract increased by 29.7%(93.1%) whereas the age-standardized global prevalence of cataract-related blindness improved by -27.5% and MSVI increased by 7.2%. The contribution of cataract to the age-standardized prevalence of blindness exceeded the global figure only in South Asia (62.9%) and Southeast Asia and Oceania (47.9%). CONCLUSIONS: The number of people blind and with MSVI due to cataract has risen over the past 30 years, despite a decrease in the age-standardized prevalence of cataract. This indicates that cataract treatment programs have been beneficial, but population growth and aging have outpaced their impact. Growing numbers of cataract blind indicate that more, better-directed, resources are needed to increase global capacity for cataract surgery.

Refractive error and vision related quality of life.

BACKGROUND: To investigate and compare the vision-related quality of life (QOL) in different types of refractive error (RE). METHODS: This cross-sectional study was performed on 200 subjects, categorized into four groups of 50 each, consisting of subjects with myopia, hyperopia, astigmatism, and emmetropia, the latter being the control group. The mean age of the participants was 23.88 ± 5.87 (range, 15 to 38: 110 females and 90 males). RE was defined as myopia, spherical equivalent (SE) < -0.25 diopters (D), hyperopia, SE > + 0.25 D, astigmatism, cylinder < -0.25 D, and emmetropia (-0.25 ≤ SE(D) ≤ + 0.25, cylinder ≥ -0.25). Groups are subdivided into very low magnitudes of RE (0.50 and 0.75) and significant RE (1.00 ≤). Vision-related QOL was assessed using the Persian version of the 25-item National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25). The NEI-VFQ was scored as visual function and socioemotional scales using Rasch analysis. RESULTS: Corrected myopia, astigmatism, uncorrected myopia, and hyperopia had a lower vision-related QOL than emmetropes. (P < 0.001). Vision-related QOL in myopic subjects was lower than that in astigmatic participants. Very low myopes, who often do not use correction, had a significantly lower QOL than other groups. CONCLUSION: Individuals with refractive errors experience a lower QOL score than those without. Notably, the adverse impact on QOL score is significantly greater in myopic cases, particularly very low myopia, compared to other refractive errors. Therefore, it is strongly recommended not to neglect managing very low myopia since it may improve participants' QOL.

Measurement of visual functioning following first and second eye cataract surgery using Vision-Related Activity Limitation Item Bank.

PURPOSE: This study aims to compare visual functioning (VF) after first or second eye cataract surgery using the vision-related activity limitation (VRAL) item bank. METHODS: This prospective, interventional study included 787 patients (mean age, 58.2 years) with cataract undergoing cataract surgery (first eye surgery with/out ocular comorbidity, second eye surgery with/out ocular comorbidity) at a tertiary eye care center, South India, who were administered the item bank pre- and at 6 weeks postoperatively to assess change in VF. Rasch analysis was used to estimate VF at both time points, and responsiveness to cataract surgery was calculated as effect size (ES) which was interpreted as small (≤ 0.2), moderate (0.3-0.7), and large (≥ 0.8). RESULTS: Mean best-corrected logMAR VA in surgical eye improved significantly postoperatively compared to preoperative VA (0.20 ± 0.40 vs. 1.19 ± 0.96; P < 0.0001) across all groups. Patients reported significant and large improvements in VF postoperatively across all groups: largest ES for first eye surgery without comorbidity (1.87 [95% CI, 1.61, 2.13]) and smallest for second eye without ocular comorbidity (1.55 [95% CI, 1.22, 1.88]). Compared to patients undergoing second eye surgery, first eye surgery patients reported significantly lower VF preoperatively (-0.72 ± 2.39 vs. 0.17 ± 2.34 logits; P < 0.0001), and a larger change in VF postoperatively (3.71 ± 2.33 logits vs. 4.27 ± 2.83 vs.; P = 0.004). CONCLUSIONS: Cataract surgery resulted in large and significant improvements in VF, regardless of ocular comorbidity and first or second eye surgery. The VRAL item bank is a useful tool to measure responsiveness to cataract surgery.

Constructing country-specific quality-of-life item banks for adults with amblyopia and strabismus in Australia and India.

CLINICAL RELEVANCE: Understanding the quality-of-life (QoL) impacts of amblyopia and strabismus from the perspectives of patients using validated tools would enable eye care practitioners to provide better clinical management. BACKGROUND: Item banks are advanced patient reported outcome measures with several advantages over traditional QoL assessment. This paper describes the development of amblyopia and strabismus-specific QoL item banks for two distinct country settings: Australia (high-income) and India (low-middle income) and examines the unique QoL issues. METHODS: Using a bottom-up systematic approach, the content for the item banks was identified from three sources: existing self-report amblyopia and strabismus questionnaires (n = 22), qualitative literature (n = 5) and prospective qualitative studies in Australia (n = 49) and India (n = 30). The initial item pool underwent item evaluation, construction, and pre-testing to form optimal sets of representative items. The Indian item pools were first developed in English and translated into Hindi and Tamil using a rigorous translation protocol. The differences in QoL experiences that emanated from the qualitative studies and the number of common and unique items in the final item pools were compared. RESULTS: The final Australian and Indian item pools comprised 312 and 277 items, respectively, covering 11 QoL domains. Two hundred and sixty items (79%) were common to both countries, and 21% were unique. Of the 11 domains, except for activity limitation (64.5%), visual symptoms (73.3%) and emotional impact (75.5%) domains, all other domains had over 80% of items common to both countries. The unique items can be attributed to differences in QoL experiences, individual perspectives, culture, lifestyle, country setting and health systems. CONCLUSION: Amblyopia has a multifaceted impact on QoL irrespective of the country settings. Despite a huge overlap in QoL impacts between Australia and India, both countries had unique issues, especially activity limitations. The study developed comprehensive, country-specific item pools for Australia and India.

Measuring quality of vision including negative dysphotopsia.

PURPOSE: To adapt the Quality of Vision Questionnaire (QoV) for measuring negative dysphotopsia and to validate the original and modified versions in the Dutch population. METHODS: The QoV was translated into Dutch according to standardized methodology. Negative dysphotopsia items were constructed based on focus group interviews, literature review and clinical data. The questionnaire was completed by 404 subjects, including contact lens wearers, patients with cataract and after cataract surgery (95.5% with a monofocal, 4.5% with a multifocal intraocular lens). Rasch analysis was applied for evaluation of reliability and validity of the original QoV and modified version, Negative Dysphotopsia QoV (ND-QoV). RESULTS: The frequency, severity and bothersome scales of the QoV and ND-QoV demonstrated good measurement precision, good fit statistics for all but one item, but significant mistargeting of more than one logit. Item estimations were stable across the study groups and scales were unidimensional with more than 50% of variance explained by the measurements. There was a positive correlation between questionnaire scores and best corrected visual acuity (r = 0.3, p < 0.01). The quality of vision measured by all three scales was significantly poorer (p < 0.01) in patients with negative dysphotopsia compared to asymptomatic pseudophakic patients. CONCLUSION: The Dutch version of the QoV questionnaire has shown good psychometric properties comparable to the native version as well as good reliability and validity. The addition of negative dysphotopsia items is a valuable modification for the reliable assessment of quality of vision in pseudophakic patients.

Patient-reported outcomes in patients with vitreous floaters: A systematic literature review.

Seeking treatment for bothersome vitreous floaters is patient driven. To measure the impact of floaters and treatment on an individual's quality of life, patient-reported outcome measurements (PROMs) are essential. We review all studies using a PROM for patients with floaters. We evaluated content coverage against quality-of-life domains previously identified in other ophthalmic disorders, and against a qualitative study investigating quality-of-life issues in patients with floaters. We assessed measurement properties of PROMs using an extensive range of psychometric quality criteria. We identified 59 studies using 28 different PROMs. Many PROMs were not specifically developed for patients with floaters. Floater-specific PROMs were mostly based on content validation from an ophthalmologist or researcher perspective; two included a patient perspective. Using the outcomes of the qualitative study, we found that the floater-specific PROMs were narrow in their content coverage, with most items relating to visual symptoms and activity limitations. Testing the psychometric quality of PROMs was rare, and when employed mostly limited to responsiveness and known group validity. The remarkable high number of floater-specific PROMs reveals a need for such measurements in ophthalmology. Unfortunately, reporting on psychometric quality is limited, and content development is most often done without patient involvement.

Evaluating patient-reported outcome measures (PROMs) for future clinical trials in adult patients with optic neuritis.

OBJECTIVE: To search for and critically appraise the psychometric quality of patient-reported outcome measures (PROMs) developed or validated in optic neuritis, in order to support high-quality research and care. METHODS: We systematically searched MEDLINE(Ovid), Embase(Ovid), PsycINFO(Ovid) and CINAHLPlus(EBSCO), and additional grey literature to November 2021, to identify PROM development or validation studies applicable to optic neuritis associated with any systemic or neurologic disease in adults. We included instruments developed using classic test theory or Rasch analysis approaches. We used established quality criteria to assess content development, validity, reliability, and responsiveness, grading multiple domains from A (high quality) to C (low quality). RESULTS: From 3142 screened abstracts we identified five PROM instruments potentially applicable to optic neuritis: three differing versions of the National Eye Institute (NEI)-Visual Function Questionnaire (VFQ): the 51-item VFQ; the 25-item VFQ and a 10-item neuro-ophthalmology supplement; and the Impact of Visual Impairment Scale (IVIS), a constituent of the Multiple Sclerosis Quality of Life Inventory (MSQLI) handbook, derived from the Functional Assessment of Multiple Sclerosis (FAMS). Psychometric appraisal revealed the NEI-VFQ-51 and 10-item neuro module had some relevant content development but weak psychometric development, and the FAMS had stronger psychometric development using Rasch Analysis, but was only somewhat relevant to optic neuritis. We identified no content or psychometric development for IVIS. CONCLUSION: There is unmet need for a PROM with strong content and psychometric development applicable to optic neuritis for use in virtual care pathways and clinical trials to support drug marketing authorisation.

Investigating the Link Between Visual Quality and Vision-Related Quality of Life in Patients With Keratoconus.

PURPOSE: The purpose of the study was to investigate the optical and visual determinants of vision-related quality of life (VR-QoL) in patients with keratoconus. METHODS: A cross-sectional case-control study was conducted at the Department of Ophthalmology, Antwerp University Hospital, Belgium. Patients previously diagnosed with keratoconus and healthy emmetropic or ametropic volunteers were included. Patients younger than 18 years, with ametropia of more than ±10 D, or with a history of corneal surgery or relevant ocular comorbidity limiting visual acuity were excluded. Assessment included autorefraction, high-contrast visual acuity testing, corneal imaging, intraocular straylight analysis, contrast sensitivity, aberrometry, and the National Eye Institute Visual Functioning Questionnaire (NEI VFQ-25). The Rasch-modified visual functioning scale (VFS) and socio-emotional scale were used to quantify VR-QoL. Stepwise linear regression was used to investigate the association between the clinical variables and VR-QoL. RESULTS: Seventy-seven patients with keratoconus (77 pairs of eyes) and 77 age-matched and sex-matched controls were included in the study. The scores on the VFS and the SES were significantly lower in patients with keratoconus compared with controls ( P < 0.001). Higher-order and lower-order aberrations, high-contrast visual acuity, and contrast sensitivity were poorer in patients with keratoconus ( P < 0.001). Bivariate analyses showed that spectacle-corrected high-contrast visual acuity, higher spatial frequency contrast sensitivity, and higher-order aberration metrics were strong predictors of SES ( P < 0.001) and of VFS ( P < 0.001). Higher-order aberration of the worse eye was the strongest predictor for both SES (b = 0.310, P < 0.001) and VFS (b = 0.638, P < 0.001) on stepwise regression. Contrast sensitivity was not included in the stepwise regression because of insufficient data in the keratoconus group (33/77 patients; 42.9%). CONCLUSIONS: Both higher and lower aberration showed a strong correlation with VR-QoL, surpassing high-contrast visual acuity. These findings underline the importance of visual quality measures within keratoconus research and clinical care.

Patient-Reported Outcomes in Keratoconus: A Save Sight Keratoconus Registry Study.

PURPOSE: The aim of this study was to evaluate the quality-of-life (QoL) status in keratoconus severity subgroups using the Keratoconus Outcomes Research Questionnaire (KORQ) and to determine the relationship between the QoL scores and the standard clinical variables. METHODS: A cross-sectional study was conducted using prospective, web-based Save Sight Keratoconus Registry data. Rasch analysis was conducted on the KORQ data using the Andrich Rating Scale Model. Comparative analysis included Welch t test and 1-way ANOVA. Associations between visual acuity, corneal curvature, and minimum corneal thickness with KORQ scores were evaluated with Pearson correlation and multiple regression adjusted for age and sex. RESULTS: The KORQ was completed by 542 patients with keratoconus (male, 67.7%; mean age, 31.6 years). Keratoconus severity, based on Kmax, was mild [<48 diopter (D)], moderate (48-55 D), and severe (>55 D) in 26.3%, 45.0%, and 28.7% of patients, respectively. Activity limitation (AL) and symptoms (SY) scales of the KORQ had robust psychometric properties including well-functioning response categories, unidimensionality, excellent measurement precision, and satisfactory fit statistics. In a group-wise analysis, the female patients had significantly lower AL and SY scores. Similarly, the severe keratoconus group had the worst AL and SY scores. Contact lens wearers had worse KORQ scores than the spectacles wearers. Overall, statistically significant but weak correlations between KORQ scores and visual acuity and corneal curvature (Kmax and K2) (Pearson r, 0.11-0.35) were observed. The correlations for SY were weaker than for AL scores. CONCLUSIONS: Female sex, contact lens wear, reduced visual acuity, and higher disease severity were associated with worse AL and SY scores in keratoconus. Although the correlations between clinical and QoL scores were statistically significant, the low magnitudes suggested a complex relationship between clinical parameters and patient-reported outcomes.

Evaluating patient-reported outcome measures (PROMs) for clinical trials and clinical practice in adult patients with uveitis or scleritis: a systematic review.

Patient reported outcome measures (PROMs) capture impact of disease and treatment on quality of life, and have an emerging role in clinical trial outcome measurement. This study included a systematic review and quality appraisal of PROMs developed or validated for use in adults with uveitis or scleritis. We searched MEDLINE, EMBASE, PsycINFO, CINAHL and grey literature sources, to 5 November 2021. We used established quality criteria to grade each PROM instrument in multiple domains from A (high quality) to C (low quality), and assessed content development, validity, reliability and responsiveness. For instruments developed using classic test theory-based psychometric approaches, we assessed acceptability, item targeting and internal consistency. For instruments developed using Item Response Theory (IRT) (e.g. Rasch analysis), we assessed response categories, dimensionality, measurement precision, item fit statistics, differential item functioning and targeting. We identified and appraised four instruments applicable to certain uveitis types, but none for scleritis. Specifically, the National Eye Institute Visual Function Questionnaire-25 (NEI-VFQ), a 3-part PROM for Birdshot retinochoroiditis (Birdshot Disease & Medication Symptoms Questionnaire [BD&MSQ], the quality of life (QoL) impact of Birdshot Chorioretinopathy [QoL BCR], and the QoL impact of BCR medication [QoL Meds], the Kings Sarcoidosis Questionnaire (KSQ), and a PROM for cytomegalovirus retinitis. These instruments had limited coverage for these heterogeneous conditions, with a focus on very rare subtypes. Psychometric appraisal revealed considerable variability between instruments, limited content development, and only one developed using Item Response Theory. In conclusion, there are few validated PROMs for patients with uveitis and none for scleritis, and existing instruments have suboptimal psychometric performance. We articulate why we do not recommend their inclusion as clinical trial outcome measures for drug licensing purposes, and highlight an unmet need for PROMs applicable to uveitis and scleritis.

The incidence of falls after first and second eye cataract surgery: a longitudinal cohort study.

OBJECTIVE: To compare fall incidence, and visual acuity and refractive status, before surgery and after first and second eye cataract surgery. DESIGN, SETTING: Prospective observational study in eight tertiary referral ophthalmology clinics in public hospitals in Sydney, Melbourne, and Perth. PARTICIPANTS: People aged 65 years or more referred for bilateral age-related cataract surgery during 2013-16, followed for maximum of 24 months after study entry or until six months after second eye surgery, whichever was shorter. MAIN OUTCOME MEASURES: Primary outcome: age- and sex-adjusted incidence of falls. SECONDARY OUTCOMES: visual acuity and refractive error. RESULTS: The mean age of the 409 included participants was 75.4 years (SD, 5.4 years); 220 were women (54%). Age- and sex-adjusted fall incidence prior to surgery was 1.17 (95% CI, 0.95-1.43) per year, 0.81 (95% CI, 0.63-1.04) per year after first eye surgery, and 0.41 (95% CI, 0.29-0.57) per year after second eye surgery. For the 118 participants who underwent second eye surgery and participated in all follow-up visits, age- and sex-adjusted incidence before (0.80 [95% CI, 0.55-1.15] falls per year) and after first eye surgery (0.81 [95% CI, 0.57-1.15] falls per year) was similar, but was lower after second eye surgery (0.32 [95% CI 0.21-0.50] falls per year). Mean habitual binocular visual acuity (logMAR) was 0.32 (SD, 0.21) before surgery, 0.15 (SD, 0.17) after first eye surgery, and 0.07 (SD, 0.15) after second eye surgery. CONCLUSIONS: First eye surgery substantially improves vision in older people with cataract, but second eye surgery is required to minimise fall incidence. Timely cataract surgery for both eyes not only optimises vision in older people with cataract, but also reduces their risk of injury from falls.

Psychometric Evaluation of Glaucoma Quality of Life Item Banks (GlauCAT) and Initial Assessment Using Computerized Adaptive Testing.

Purpose: To evaluate the psychometric properties of glaucoma-specific quality of life (QoL) item banks (GlauCAT) and assess their performance using computerized adaptive testing (CAT) simulations. Methods: In this cross-sectional study, 293 participants with glaucoma (mean age ± SD, 70.7 ± 13.2 years; 45% female) answered 342 items in 12 QoL item banks (IBs): Activity Limitation (AL); Driving (DV); Convenience (CV); Economic (EC); Emotional (EM); General Symptoms (GS); Health Concerns (HC); Lighting (LT); Mobility (MB); Ocular Surface Symptoms (OS); Social (SC); and Visual Symptoms (VS). These IBs were assessed using Rasch analysis, and CAT simulations with 1000 simulated respondents were utilized to determine the average number of items to be administered to achieve moderate and high precision levels. Results: The AL, DV, EM, HC, LT, MB, EC, OS, SC, and VS IBs required relatively minor amendments to achieve satisfactory psychometric fit. To resolve multidimensionality, we split CV into Treatment Convenience (TCV) and General Convenience (GCV). Due to poor measurement precision, the GS IB was not pursued further. This resulted in 12 total IBs. In CAT simulations, an average of 3.7 and 7.3 items per IB were required to attain measurement at moderate and high precision, respectively. Conclusions: Following rigorous psychometric assessment, we developed 12 valid glaucoma-specific QoL domains that can obtain highly precise person measure estimates using a small number of items. Translational Relevance: GlauCAT will enable researchers and clinicians to quickly and comprehensively assess the impact of glaucoma and its associated interventions across a range of QoL domains.

Factors affecting quality of life in keratoconus.

PURPOSE: To identify the factors affecting the quality of life (QoL) in adults with keratoconus, using the disease-specific Keratoconus Outcomes Research Questionnaire (KORQ). METHODS: In this cross-sectional study, 574 patients with keratoconus completed the 29-item KORQ (18-item activity limitations and 11-item symptoms subscales) and demographic information. Based on mean corneal curvature to grade keratoconus severity, participants were categorised into four groups: mild <48 dioptres [D]; moderate: 48 to 53 D; advanced: 54 to 55 D and severe: >55D. Rasch analysis was used to assess the psychometric properties and to score the KORQ. Multivariable regression was performed to determine the independent impact of age, sex, laterality, severity and duration of keratoconus, education, employment status and mode of treatment for keratoconus on activity limitations and symptoms. RESULTS: Mean (SD) age was 24.5 (5.1) years. 304 (53%), 160 (28%), 26 (4%) and 84 (15%) belonged to keratoconus groups 1, 2, 3 and 4, respectively. Rasch analysis demonstrated the 'activity limitations' and 'symptoms' KORQ subscales to possess good psychometric properties. Statistically significant associations were found between activity limitation score and the following measures: visual acuity (VA) in the better-seeing eye (r = -0.10, p = 0.01); VA in the worse-seeing eye (r = -0.09, p = 0.04) and ocular aberrations (r = -0.13, p = 0.008) in the worse-seeing eye. Statistically significant associations were also found between symptoms score and mean corneal curvature in the better-seeing eye (r = -0.10, p = 0.02). In regression models, female sex was associated with 21% worse symptom score than male (ß = -0.33, 95% CI, -0.09, -0.59, p = 0.01) and working people experienced clinically and statistically significantly greater trouble from symptoms compared to those not working (ß =0.44, 95% CI, 0.17, 0.70, p = 0.001). CONCLUSIONS: People with keratoconus have poorer QoL in terms of activity limitations if they have poorer VA and greater wavefront aberrations, and in terms of symptoms if they are female and employed.

Capturing the experiences of patients with inherited optic neuropathies: a systematic review of patient-reported outcome measures (PROMs) and qualitative studies.

PURPOSE: To identify and comprehensively evaluate studies capturing the experience of individuals affected by an inherited optic neuropathy (ION), focusing on patient-reported outcome measures (PROMs) and qualitative studies where the health status and quality of life (QoL) of these individuals have been explored. METHODS: Systematic review of five databases using a search strategy combining four concepts: (1) ION; (2) QoL and health status; (3) PROMs; and (4) qualitative research. Studies assessing the impact of ION on any QoL domain using a PROM or qualitative methodology were included and appraised, using criteria based on the COSMIN checklist (for PROM studies) and the CASP checklist (for qualitative studies). RESULTS: Of 1326 unique articles identified, six studies were included. Five PROMs were identified: Visual Function Index (VF-14); Hospital Anxiety and Depression Scale (HADS); a novel graphical online assessment tool (NGOAT) for reporting emotional response to vision loss; a new PROM informed by the DSM-V Criteria for Major Depressive Disorder; and an interpersonal and career 'impact rating' PROM. The psychometric performance of included PROMs were poorly described. Qualitative studies found that vision loss resulted in psychosocial losses including loss of social and communication skills and loss of independence and freedom. Factors that modified the response to vision loss were also identified. CONCLUSION: The current PROMs used by individuals with ION have poor content coverage, primarily measuring activity limitation and emotional well-being, and insufficient reporting of psychometric performance. There is a need to develop a PROM for individuals ION to report their experiences of living with their condition.

Comparing the measurement properties of visual analogue and verbal rating scales.

PURPOSE: Utilising Rasch analysis on the Keratoconus Outcome Research Questionnaire (KORQ) data, we explored the hypothesis that the KORQ with discrete verbal rating scale (VRS) would demonstrate better psychometric properties and provide less noise in measurement than with a visual analogue scale (VAS). METHODS: The KORQ is a keratoconus-specific patient-reported outcome measure; it has activity limitation and symptoms scales. The KORQ scales with two different rating scales (VAS and a discrete 4-response VRS) were completed by self-administration by people with keratoconus. For each KORQ scale, Rasch analysis-based psychometric properties were compared between the two versions. Rasch analysis was also used to optimise rating scale functioning when disordered thresholds were observed. RESULTS: 118 (mean age ± SD, 46.4 ± 0.4 years) and 169 (45.4 ± 14.7 years) people completed the KORQ with VAS and VRS, respectively. Both scales demonstrated high measurement precision. However, the VAS rating scale was disordered (6 out of 11 categories dysfunctional) and had two misfitting items. Conversely, the VRS had ordered categories and no misfitting items. For the disordered VAS, ordering was achieved only after collapsing 11 categories into four categories. In comparison to the KORQ with VRS, the repaired VAS had lower measurement precision, test information, variance explained by the measure, poor targeting, and reduced measurement range. CONCLUSIONS: The KORQ demonstrated superior psychometric properties when measured using a VRS than with a VAS. This illustrates the advantages of verbal rating scales for a patient-reported outcome measurement over a visual analogue scale.

Does non-strabismic amblyopia affect the quality of life of adults? Findings from a qualitative study.

PURPOSE: While much is known about the psychosocial impacts of strabismus, little is known about the effects of non-strabismic amblyopia on quality of life (QoL). The aim of this study was to explore the long-term impacts of anisometropic amblyopia. METHODS: A phenomenological qualitative investigation was carried out on a sample of adults with anisometropic amblyopia. Subjects participated in in-depth telephone interviews and described how their eye condition affected different aspects of their life. The interviews were audio-recorded, transcribed verbatim and analysed iteratively to form emergent themes. RESULTS: Sixteen participants took part in the study (median age: 21.5 years; range: 18-36 years; 11 male and 5 female). Six themes emerged: (1) symptoms experienced by participants, (2) concerns and apprehensions, (3) emotional impacts, (4) activity limitations, (5) hassle and inconveniences and (6) economic and career implications. Symptoms reported by participants ranged from glare to difficulty concentrating. They were extremely concerned about the safety of their better eye and lived with several doubts and anxieties. Negative emotions such as grief and disappointment due to eye care negligence in childhood was apparent. Guilt and regretful feelings were present in those who did not comply with past treatment. Participants expressed several limitations in driving, reading, mobility (e.g., using stairs) and tasks requiring high resolution. Reported inconveniences associated with coping with their eye condition included having to travel across the country in search of a cure for their amblyopia. Economic impacts ranged from costs associated with accessing eye care and management to career choices being compromised. CONCLUSION: Lived experiences of people with anisometropic amblyopia indicate that the QoL impacts are multifaceted and substantial, even in the absence of strabismus. The results have the potential to influence patient-practitioner relationship by opening newer horizons to communication and care while managing adult amblyopes.

Development and application of the ocular immune-mediated inflammatory diseases ontology enhanced with synonyms from online patient support forum conversation.

BACKGROUND: Unstructured text created by patients represents a rich, but relatively inaccessible resource for advancing patient-centred care. This study aimed to develop an ontology for ocular immune-mediated inflammatory diseases (OcIMIDo), as a tool to facilitate data extraction and analysis, illustrating its application to online patient support forum data. METHODS: We developed OcIMIDo using clinical guidelines, domain expertise, and cross-references to classes from other biomedical ontologies. We developed an approach to add patient-preferred synonyms text-mined from oliviasvision.org online forum, using statistical ranking. We validated the approach with split-sampling and comparison to manual extraction. Using OcIMIDo, we then explored the frequency of OcIMIDo classes and synonyms, and their potential association with natural language sentiment expressed in each online forum post. FINDINGS: OcIMIDo (version 1.2) includes 661 classes, describing anatomy, clinical phenotype, disease activity status, complications, investigations, interventions and functional impacts. It contains 1661 relationships and axioms, 2851 annotations, including 1131 database cross-references, and 187 patient-preferred synonyms. To illustrate OcIMIDo's potential applications, we explored 9031 forum posts, revealing frequent mention of different clinical phenotypes, treatments, and complications. Language sentiment analysis of each post was generally positive (median 0.12, IQR 0.01-0.24). In multivariable logistic regression, the odds of a post expressing negative sentiment were significantly associated with first posts as compared to replies (OR 3.3, 95% CI 2.8 to 3.9, p < 0.001). CONCLUSION: We report the development and validation of a new ontology for inflammatory eye diseases, which includes patient-preferred synonyms, and can be used to explore unstructured patient or physician-reported text data, with many potential applications.

Item banks for measurement of refractive error-specific quality of life.

PURPOSE: To evaluate the psychometric properties of refractive error-specific quality of life (QoL) item banks and assess their performance using computerised adaptive testing (CAT) simulations. METHODS: In this cross-sectional study a 392-item questionnaire, grouped under 11 QoL domains, was interviewer-administered to 305 people with refractive error [mean age ± S.D., 30.5 ± 14.1 (range (18 to 83) years; male, 50.5%; mean ± S.D. spherical equivalent refractive error -2.4 ± 2.9 (range: -15.0 to +11.0) Dioptres; spectacles (n = 257), contact lens (n = 37), refractive surgery (n = 25), uncorrected refractive error (n = 57)]. Rasch analysis was conducted on each QoL domain using the Andrich rating scale model to investigate parameters including response category functioning, person- and item-reliability, infit and outfit statistics, unidimensionality, targeting, differential item functioning and local item dependency. The resulting item banks underwent CAT simulations in 1,000 cases with 'high' and 'moderate' precision stopping rules. RESULTS: Rasch analysis iterations resulted in 13 refractive error-specific item banks (Convenience, Health concerns, Economic, Activity limitation, Mobility, Emotional, Social, Visual symptoms frequency, Visual symptoms severity, Visual symptoms bothersome, Comfort symptoms frequency, Comfort symptoms severity and Comfort symptoms bothersome), containing a total of 366 items. The item banks had good psychometric properties including satisfactory measurement precision, infit and outfit statistics and unidimensionality. In CAT simulations, the mean number of items required to achieve high and moderate measurement precision was 9.4 and 4.7, respectively. CONCLUSION: Overall, refractive error-specific QoL item banks show promise in their ability to comprehensively and precisely evaluate a range of quality of life parameters. These items banks when administered using a CAT system offer unique outcome tools for implementation in clinical trials, healthcare and research.

Mini-Scleral Lenses Improve Vision-Related Quality of Life in Keratoconus.

PURPOSE: To evaluate the effects of mini-scleral lenses on visual acuity (VA) and visual functioning in patients with keratoconus. METHODS: This prospective, interventional study examined the effects of mini-scleral lenses on VA and visual functioning in patients with keratoconus. Patients younger than 18 years or with a history of refractive surgery or corneal graft surgery were excluded. Patients were fitted with mini-Misa lenses, Senso mini-scleral lenses, or Zenlens mini-scleral lenses. Outcome measures were scleral lens-corrected VA and vision-related quality of life as assessed with the National Eye Institute Visual Functioning Questionnaire (NEI VFQ-39). RESULTS: Eighty-nine eyes of 50 keratoconus patients were included in the study. Median baseline logarithm of the minimal angle of resolution VA with habitual correction was 0.22 (range 0.02-1.04). Mini-scleral lens fitting resulted in a statistically significant visual improvement (median 0; P < 0.0001). At the 6-month follow-up, 11 patients (22%) had abandoned mini-scleral lens wear, primarily because of difficulties with lens handling (7 patients). Of the 39 patients with continued wear, 33 patients (84.6%) wore their lenses for a daily average of 12 hours. NEI-VFQ scoring in these patients showed significantly improved results for both visual functioning and socioemotional scales after scleral lens fitting (P < 0.0001). CONCLUSIONS: Mini-scleral lenses significantly improve VA and visual functioning on NEI-VFQ in patients with keratoconus. Difficulties with lens insertion and removal are the principal reason for lens dropout.