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CLINICAL RELEVANCE: Children with vision impairment can have difficulty accessing classroom reading material and knowledge of which students are likely to have improved performance reading performance with reverse polarity would be of value to educators. BACKGROUND: Printed material is typically presented as black text on a white background; however, reversing the polarity to white text on a black background may improve the reading speed for children with vision impairment. This study sought to identify the visual function or pathological features of children with vision impairment where reversing the polarity of text would improve their reading performance. METHODS: Forty-eight vision-impaired participants (27 male), aged 5-18 years with binocular visual acuities between 0.18-1.52 logMAR, were included. Reading performance was assessed by changes in Critical Print Size (ΔCPS), Maximum Reading Speed (ΔMRS) in normal and reverse polarity digital print, and numeric reading speed (ΔNRS) with normal and reverse polarity fonts. Correlations were made with 30 Hz flicker electroretinogram amplitude and high/low contrast acuity. Paired nonparametric tests evaluated significance in pathological condition groups. RESULTS: Significant negative correlations were only found between the 30 Hz flicker amplitude and ΔMRS (r = -.42, p = .028) and ΔNRS (r = -.46, p = .027). Follow-up pairwise comparisons based on pathology group only showed a significant effect of the retinal dystrophy group and CPS (n = 12, z = -2.24, p = .025). All other pairwise comparisons based on group were non-significant (p > .05). CONCLUSIONS: This study did not identify a specific pathological group or visual functional measure that could be used as a clinical marker to predict the impact of reversing polarity. However, significant improvements could be made in reading performance for some children and so a reading performance assessment is recommended for all children with vision impairment.
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Purpose: This systematic review evaluates current literature on the impact vision impairment has on reading and literacy levels within education. Methods: Six databases were searched with inclusion criteria of trials or studies involving children who are blind or vision impaired, and impact on academic or school performance including reading and literacy. 1262 articles were identified, with 61 papers undergoing full screening. Quality appraisal was performed using Critical Appraisal Skills Program (CASP) and seven articles deemed eligible for inclusion. Results: Included articles achieved a quality score of over 70 % using the CASP checklists. Direct comparison of articles was not possible due to methodological differences in assessing reading and literacy levels. All seven studies investigated aspects of reading speed, with additional measures of reading performance, such as reading reserve, comprehension, and reading accuracy. Discussion: Underlying trends highlighted students with a vision impairment do not perform at same level as their normally sighted peers with respect to reading performance - in terms of speed, but not ability. Additionally, early intervention to enhance literacy skills may help improve educational outcomes. Future direction should be aimed at identifying specific obstacles to learning these students face and providing interventions to improve academic outcomes. (AU)
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Humans , Child , Blindness , Education , Literature , ReadingABSTRACT
This study aimed to examine the existing literature that investigated the effectiveness of optical coherence tomography (OCT) and optical coherence tomography angiography (OCT-A) as a biomarker for idiopathic intracranial hypertension (IIH). Our search was conducted on January 17th, 2024, and included the databases, Medline, Scopus, Embase, Cochrane, Latin American and Caribbean Health Sciences Literature (LILACS), International Standard Randomized Controlled Trial Number (ISRCTN) registry, and the International Clinical Trials Registry Platform (ICTRP). Our final review included 84 articles. In 74 studies, OCT was utilized as the primary ocular imaging method, while OCT-A was employed in two studies including eight studies that utilized both modalities. Overall, the results indicated that IIH patients exhibited significant increases in retinal nerve fiber layer (RNFL) thickness, total retinal and macular thickness, optic nerve head volume, and height, optic disc diameter and area, rim area, and thickness compared to controls. A significant correlation was observed between cerebrospinal fluid (CSF) pressure and OCT parameters including RNFL thickness, total retinal thickness, macular thickness, optic nerve head volume, and optic nerve head height. Interventions aimed at lowering CSF pressure were associated with a substantial improvement in these parameters. Nevertheless, studies comparing peripapillary vessel density using OCT-A between IIH patients and controls yielded conflicting results. Our systematic review supports OCT as a powerful tool to accurately monitor retinal axonal and optic nerve head changes in patients with IIH. Future research is required to determine the utility of OCT-A in IIH.
Subject(s)
Pseudotumor Cerebri , Tomography, Optical Coherence , Humans , Pseudotumor Cerebri/diagnostic imaging , Biomarkers/cerebrospinal fluid , Retina/diagnostic imaging , Retina/pathologyABSTRACT
PURPOSE: This systematic review evaluates current literature on the impact vision impairment has on reading and literacy levels within education. METHODS: Six databases were searched with inclusion criteria of trials or studies involving children who are blind or vision impaired, and impact on academic or school performance - including reading and literacy. 1262 articles were identified, with 61 papers undergoing full screening. Quality appraisal was performed using Critical Appraisal Skills Program (CASP) and seven articles deemed eligible for inclusion. RESULTS: Included articles achieved a quality score of over 70 % using the CASP checklists. Direct comparison of articles was not possible due to methodological differences in assessing reading and literacy levels. All seven studies investigated aspects of reading speed, with additional measures of reading performance, such as reading reserve, comprehension, and reading accuracy. DISCUSSION: Underlying trends highlighted students with a vision impairment do not perform at same level as their normally sighted peers with respect to reading performance - in terms of speed, but not ability. Additionally, early intervention to enhance literacy skills may help improve educational outcomes. Future direction should be aimed at identifying specific obstacles to learning these students face and providing interventions to improve academic outcomes.
Subject(s)
Literacy , Reading , Child , Humans , Students , ComprehensionABSTRACT
This study aimed to review the current literature exploring the utility of noninvasive ocular imaging for the diagnosis of peripheral artery disease (PAD). Our search was conducted in early April 2022 and included the databases Medline, Scopus, Embase, Cochrane, and others. Five articles were included in the final review. Of the five studies that used ocular imaging in PAD, two studies used retinal color fundus photography, one used optical coherence tomography (OCT), and two used optical coherence tomography angiography (OCTA) to assess the ocular changes in PAD. PAD was associated with both structural and functional changes in the retina. Structural alterations around the optic disc and temporal retinal vascular arcades were seen in color fundus photography of patients with PAD compared to healthy individuals. The presence of retinal hemorrhages, exudates, and microaneurysms in color fundus photography was associated with an increased future risk of PAD, especially the severe form of the disease. The retinal nerve fiber layer (RNFL) was significantly thinner in the nasal quadrant in patients with PAD compared to age-matched healthy individuals in OCT. Similarly, the choroidal thickness in the subfoveal region was significantly thinner in patients with PAD compared to controls. Patients with PAD also had a significant reduction in the retinal and choroidal circulation in OCTA compared to healthy controls. As PAD causes thinning and ischemic changes in retinal vessels, examination of the retinal vessels using retinal imaging techniques can provide useful information about early microvascular damage in PAD. Ocular imaging could potentially serve as a biomarker for PAD. PROSPERO ID: CRD42022310637.
Subject(s)
Optic Disk , Peripheral Arterial Disease , Humans , Tomography, Optical Coherence/methods , Photography/methods , Peripheral Arterial Disease/diagnostic imaging , Biomarkers , Retinal Vessels/diagnostic imagingABSTRACT
CLINICAL RELEVANCE: The support of students with a vision impairment throughout education could be enhanced by assessing the functional reading ability of the individual. This visual assessment could inform educators of individualised student needs and potentially improve the academic achievement for these students. BACKGROUND: Support for children with a vision impairment within a classroom is typically based on clinical findings of distance visual acuity and visual fields. Therefore, determining optimal print size for reading is essential to ensure best academic outcomes. Secondary aims were to investigate the possible impact of underlying pathology on reading ability. METHODS: Forty-seven participants were recruited from a state-wide support service for children with a vision impairment in South Australia. Three visual acuity groups were formed based on World Health Organisation definitions of mild, moderate, and severe vision impairment. Correlation between clinical measures of distance visual acuity using the Freiburg Visual Acuity Test, were compared with reading acuity and critical print size (smallest font before reading speed reduced) using Minnesota low vision reading chart (MNREAD). RESULTS: No significant correlations were found for mild (0.20-0.49 logMAR) and severe (1.00-1.52 logMAR) vision impairment groups between distance visual acuity and reading acuity read (p = .64, CI [-.585, .395]/p = .82, CI [-.48, .58]) or critical print size (p = .78, CI [-.57, .45]/p = .43, CI [-.34, .68]. A significant correlation was found for the moderate vision impairment group: 0.50-0.99 logMAR for minimum reading acuity (p < .001, CI [.44, .91]) and critical print size (p = .03, CI [.05, .80]). CONCLUSIONS: Standard clinical measures of distance visual acuity are an unpredictable estimate of reading ability in children with mild and severe vision impairment. Additional measures of functional near reading ability could provide a more meaningful indicator of reading ability and help provide optimum support to students through education.
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With increasing population there is a rise in pathological diseases that the healthcare facilities are grappling with. Sweat-based wearable technologies for continuous monitoring have overcome the demerits associated with sweat sampling and sensing. Hence, sweat as an alternative biofluid holds great promise for the quantification of a host of biomarkers and understanding the functioning of the body, thereby deducing ailments quickly and economically. This comprehensive review accounts for recent advances in sweat-based LOCs (Lab-On-Chips), which are a likely alternative to the existing blood-urea sample testing that is invasive and time-consuming. The present review is focused on the advancements in sweat-based Lab-On-Chips (LOCs) as an alternative to invasive and time-consuming blood-urea sample testing. In addition, different sweat collection methods (direct skin, near skin and microfluidic) and their mechanism for urea sensing are explained in detail. The mechanism of urea in biofluids in protein metabolism, balancing nitrogen levels and a crucial factor of kidney function is described. In the end, research and technological advancements are explained to address current challenges and enable its widespread implementation.
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Sweat , Urea , Skin , Health Facilities , Lab-On-A-Chip DevicesABSTRACT
The aim of this report was to analyze reaction times and accuracy in children with a vision impairment performing a feature-based visual search task using a multiverse statistical approach. The search task consisted of set sizes 4, 16, and 24, consisting of distractors (circle) and a target (ellipse) that were presented randomly to school-aged individuals with or without a vision impairment. Interactions and main effects of key variables relating to reaction times and accuracy were analyzed via a novel statistical method blending GAMLSS (generalized additive models for location, scale, and shape) and distributional regression trees. Reaction times for the target-present and target-absent conditions were significantly slower in the vision impairment group with increasing set sizes (p < .001). Female participants were significantly slower than were males for set sizes 16 and 24 in the target-absent condition (p < .001), with male participants being significantly slower than females in the target-present condition (p < .001). Accuracy was only significantly worse (p = .03) for participants less than 14 years of age for the target-absent condition with set sizes 16 and 24. There was a positive association between binocular visual acuity and search time (p < .001). The application of GAMLSS with distributional regression trees to the analysis of visual search data may provide further insights into underlying factors affecting search performance in case-control studies where psychological or physical differences may influence visual search outcomes.
Subject(s)
Vision Disorders , Vision, Ocular , Male , Female , Humans , Child , Visual Acuity , Reaction Time , Case-Control StudiesABSTRACT
We review patient-reported outcome measures (PROMs) used to evaluate the quality of life (QoL) in uveitis and provide a quality assessment of the psychometric properties of the PROMs, making it easier to choose the best questionnaire for uveitis. Our review included 158 articles. A total of 98 PROMs were used to measure QoL in uveitis and the National Eye Institute Visual Function Questionnaire 25 (NEI VFQ -25) was the most frequently used PROM in these studies. There were 5 uveitis-specific PROMs, but they were meant for either birdshot choroidopathy or cytomegalovirus retinitis or paediatric uveitis. There are no PROMs developed explicitly for the more common, anterior uveitis, intermediate uveitis, panuveitis, and chronic uveitis. The uveitis-specific PROMs performed better in our quality assessment criteria compared to other PROMs. However, these PROMs were constructed using traditional classical test theory and have not been assessed using the modern family of psychometric assessment methods such as Rasch analysis. As new therapeutic modalities for uveitis such as the new biological agents and steroid implants, continue to evolve, a comprehensive PROM will be increasingly valued in clinical trial settings to compare the effects of treatments from the patient's perspective.
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Uveitis, Intermediate , Uveitis , Humans , Child , Quality of Life , Uveitis, Intermediate/drug therapy , Vision, Ocular , Surveys and Questionnaires , Patient Reported Outcome MeasuresABSTRACT
Context: Sweat glands (SGs) play a vital role in thermal regulation. The function and structure are altered during the different pathological conditions.Objective: These alterations are studied through three techniques: biopsy, sweat analytes and electrical activity of SG.Methods: The morphological study of SG through biopsy and various techniques involved in quantifying sweat analytes is focussed on here. Electrical activities of SG in diabetes, neuropathy and nephropathy cases are also discussed, highlighting their limitations and future scope.Results and Conclusion: The result of this review identified three areas of the knowledge gap. The first is wearable sensors to correlate pathological conditions. Secondly, there is no device to look for its structure and quantify its associated function. Finally, therapeutic applications of SG are explored, especially for renal failure. With these aspects, this paper provides information collection and correlates SG with pathologies related to diabetes. Hence this could help researchers develop suitable technologies for the gaps identified.
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OBJECTIVE: Childhood glaucoma is a chronic vision-threatening condition that may significantly impact an individual's psychosocial well-being. There is a paucity of literature investigating the quality of life (QoL) in children with glaucoma. The aim of this study was to investigate and report on the QoL issues encountered by children with glaucoma. DESIGN: This is a qualitative interview study. Data were collected through semistructured interviews. NVivo V.12 software (QSR International Pty Ltd, Melbourne, Australia) was used to analyse and code data to identify QoL themes. The prominence of QoL themes was determined by the number of children who raised issues connected to the corresponding theme. SETTING: Interviews were conducted via telephone or videoconferencing between April 2020 and July 2021. PARTICIPANTS: Eighteen children with glaucoma, aged 8-17 years, who resided in Australia, were recruited from the Australian and New Zealand Registry of Advanced Glaucoma. RESULTS: Median child age was 12.1 years (IQR: 9.7-14.5 years) and 33% were female. Seven QoL themes were identified: 'coping', 'inconveniences' and 'emotional well-being' were more prominent themes than 'symptoms', 'ocular health concerns', 'social well-being' and 'autonomy'. Adaptive coping strategies included resilience throughout clinical examinations and establishing positive relationships with ophthalmologists. These minimised inconveniences related to clinic waiting times and pupillary dilatation. External to the clinical setting, children often dissociated from their glaucoma but struggled with glare symptoms and feeling misunderstood by fellow peers. Older children aged 13-17 years commonly disengaged from their glaucoma care and expressed an unwillingness to attend ophthalmic appointments. Older children further raised issues with career options, obtaining a driver's licence and family planning under the theme of autonomy. CONCLUSIONS: The psychosocial impact of childhood glaucoma extends beyond the clinical environment and was minimised using coping strategies. Older children may require additional social and ophthalmic support as they transition into adulthood.
Subject(s)
Glaucoma , Quality of Life , Adaptation, Psychological , Adolescent , Adult , Australia , Child , Chronic Disease , Female , Glaucoma/psychology , Humans , Male , Qualitative Research , Quality of Life/psychology , Vision Disorders/psychologyABSTRACT
PURPOSE: Axenfeld-Rieger syndrome encompasses a group of developmental disorders affecting the anterior chamber structures of the eye, with associated systemic features in some cases. This study aims to compare the difference in anterior segment phenotypes such as those involving the cornea, iris, lens, and anterior chamber angle between cases with disease-causing sequence variations in FOXC1 and PITX2 . METHODS: This cross-sectional study involved 61 individuals, from 32 families with pathogenic FOXC1 or PITX2 variants, who were registered with the Australian and New Zealand Registry of Advanced Glaucoma. RESULTS: The median age of the cohort was 39 years at the time of last assessment (range 3-85 years; females, 54%). Thirty-two patients had pathogenic variants in the FOXC1 gene, and 29 patients had pathogenic variants in the PITX2 gene. Corneal abnormalities were more common in individuals with FOXC1 variants (18/36, 50%) than those with PITX2 variants (4/25, 16%; P = 0.007). Iris abnormalities such as hypoplasia ( P = 0.008) and pseudopolycoria ( P = 0.001) were more common in individuals with PITX2 variants than those with FOXC1 variants. Glaucoma was present in 72% of participants. Corneal decompensation was positively associated with corneal abnormalities ( P < 0.001), glaucoma surgery ( P = 0.025), and cataract surgery ( P = 0.002). CONCLUSIONS: Corneal abnormalities were more common in individuals with FOXC1 than in those with PITX2 variants and were often associated with early onset glaucoma. These findings highlight that patients with FOXC1 variations require close follow-up and monitoring throughout infancy and into adulthood.
Subject(s)
Eye Abnormalities , Eye Diseases, Hereditary , Forkhead Transcription Factors , Glaucoma , Homeodomain Proteins , Adolescent , Adult , Aged , Aged, 80 and over , Anterior Eye Segment/abnormalities , Australia , Child , Child, Preschool , Cross-Sectional Studies , Eye Abnormalities/genetics , Eye Diseases, Hereditary/genetics , Female , Forkhead Transcription Factors/genetics , Glaucoma/genetics , Homeodomain Proteins/genetics , Humans , Male , Middle Aged , Mutation , Pedigree , Transcription Factors/genetics , Young Adult , Homeobox Protein PITX2ABSTRACT
The aim of this study was to review all the articles that have implemented patient-reported outcome measures (PROMs) to evaluate the quality of life (QoL) in corneal transplantation and discuss quality assessments of the PROMs. An extensive literature review was undertaken to identify all the studies that used PROMs to assess the QoL in corneal transplantation. Non-original or review articles, articles on other subject area and articles on cost-effectiveness/utility without PROM data/results were excluded. Each PROM was assessed against the following criteria: content development (item identification and item selection), psychometric properties, validity, reliability, and responsiveness. 425 articles were identified of which 35 articles were included in the final review. PROMs in corneal transplantation were used to (a) evaluate the QoL after surgery, (b) compare the QoL scores between different surgical techniques and (c) determine the relationship between QoL and objective measures such as visual acuity, visual field and stereoacuity. A total of 17 PROMs were used to assess QoL in corneal transplantation. Whilst this search did not produce any PROMs that were specifically designed to assess corneal transplantation, most studies were found to have employed the National Eye Institute Visual Function Questionnaire 25 (NEI VFQ 25). The Visual Function Index 14 (VF 14) performed better in the present quality assessment criteria compared to other PROMs, however, the NEI VFQ 25 and the VF 14 PROMs were not specifically developed for corneal transplantation and therefore the QoL assessment made using these PROMs may be incomplete. As improvements in various forms of lamellar transplantation surgery techniques such as UT-DSAEK and FT-DSAEK have resulted in better visual outcomes, improved graft survival and reduced complications, a corneal transplantation specific PROM will be useful in clinical settings to compare the outcomes of different surgical techniques from the patient perspective.
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Corneal Transplantation , Quality of Life , Humans , Reproducibility of Results , Surveys and Questionnaires , Patient Reported Outcome MeasuresABSTRACT
This review of commonly prescribed psychotropic drugs aims to update the clinician on possible ophthalmic side effects that may include dry eye, diplopia, mydriasis, and cataracts. This review summarizes our current knowledge of known ocular side effects of psychotropic drugs based on reviews, case reports, case-control studies, a case series, and cross-sectional observational studies reported in the recent literature. The review covers disorders related to depression, anxiety, and stress which are commonly encountered within society and can have debilitating impacts on an individual's quality of life that may require chronic therapeutic management. The main medications used in the treatment and management of these conditions typically target receptors, metabolic enzymes, or transport pumps that alter the pre- and/or post-synaptic levels of neurotransmitters such as serotonin, norepinephrine, dopamine, gamma-aminobutyric acid, and opioids to improve mood and/or relieve pain and anxiety. Novel non-therapeutic options are undergoing clinical trials, and some patients may seek alternative therapies or have associated substance abuse issues to alleviate their symptoms. This review summarizes some of the clinical signs of depression and the main therapeutic options and their reported ocular side effects which may be pertinent today given the rise in use of psychotropic medications used to manage depression, anxiety, and stress.
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PURPOSE: To investigate and report on the quality-of-life (QoL) issues experienced by caregivers of individuals with childhood glaucoma. DESIGN: Exploratory, qualitative study. PARTICIPANTS: Thirty-five caregivers of individuals with childhood glaucoma (defined as disease onset before 18 years of age) recruited from the Australian and New Zealand Registry of Advanced Glaucoma. METHODS: A qualitative research methodology (interpretive phenomenology) was applied. Data were collected through semistructured in-depth interviews. NVivo-12 software (QSR International Pty Ltd) was used to analyze, code, and organize data into QoL themes inductively. MAIN OUTCOME MEASURES: Quality-of-life themes and their subthemes. RESULTS: The mean caregiver age was 50.2 ± 13.6 years, and 27 of 35 caregivers (77%) were mothers of an individual with childhood glaucoma. A total of 6 QoL themes were identified. Coping strategies and emotional well-being were the most prominent themes. Caregivers frequently adopted problem-focused adaptive coping strategies including partner or peer support, and normalization. A caregiver's psychosocial well-being was often impacted by feelings of guilt and regret regarding their child's delayed diagnosis, fear and anxiety related to medical and social support, and loss of control as their child developed medical autonomy. The effect of family planning from the perspective of the caregiver formed a novel QoL theme and was associated with normalization and parental confidence in management of the condition. CONCLUSIONS: Childhood glaucoma poses a substantial threat to a caregiver's psychosocial well-being. Strategies that promote normalization, peer support, psychotherapeutic intervention, and genetic counseling may be indicated and, indeed, critical to the caregiver as they adapt to supporting their child with glaucoma.
Subject(s)
Glaucoma , Hydrophthalmos , Adult , Australia , Caregivers/psychology , Child , Humans , Middle Aged , Qualitative Research , Quality of Life/psychologyABSTRACT
PURPOSE: To explore and report on the quality-of-life (QoL) issues encountered by adults with childhood glaucoma. DESIGN: Exploratory qualitative study. PARTICIPANTS: Forty-seven participants with childhood glaucoma (defined as disease onset <18 years) recruited from the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG). METHODS: A qualitative research methodology (interpretive phenomenology) was applied, and data were collected through semistructured in-depth interviews. NVivo-12 software (QSR International Pty Ltd) was used to inductively analyze and code data to identify QoL themes pertinent to the cohort studied. MAIN OUTCOME MEASURES: Quality-of-life themes and subthemes. RESULTS: Mean participant age was 40.0 ± 15.3 years, and 55% of participants were female. We identified 10 QoL themes pertinent to adults living with childhood glaucoma. Coping strategies and emotional well-being were the most prominent themes. Maladaptive coping strategies, including treatment nonadherence, were observed more commonly in individuals aged <40 years and those without a vision impairment or reviewed less regularly. Emotional well-being was affected by feelings of being misunderstood because of the rarity of the condition, being self-conscious of physical manifestations of the disease, and anxiety related to possible disease progression and vision loss. The effect of childhood glaucoma on family planning formed a novel QoL theme and included worry for their child to inherit the condition and an inability to fulfill parental duties. This often led to genetic counseling-seeking behaviors. Mobility issues were infrequently experienced. CONCLUSIONS: Childhood glaucoma poses a substantial impact to the emotional well-being of adults with the condition, which is mediated by the use of coping strategies. Genetic counseling and family planning options may be important. This study supports the development of a childhood glaucoma-specific patient-reported outcome measure for assessment of the psychosocial impact of childhood glaucoma in adults.
Subject(s)
Glaucoma , Quality of Life , Adult , Australia , Female , Glaucoma/psychology , Humans , Male , Middle Aged , Qualitative Research , Quality of Life/psychology , RegistriesABSTRACT
PURPOSE: This exploratory qualitative research was conducted to understand the quality of life (QoL) impacts of adult uveitis to develop a uveitis QoL item bank, and we present here the results of qualitative analysis of uveitis patient experience.METHODS: A qualitative approach with phenomenological study design was employed to explore the common QoL domains in uveitis. Data were collected using focus groups and face-to-face interviews. The sessions were audio-recorded, transcribed verbatim, and analysed thematically. NViVo software was used to perform qualitative analysis.RESULTS: Eight focus groups and 10 interviews were conducted with 41 patients with uveitis. Seven QoL domains were identified, namely symptoms, emotional, activity limitation, health concerns, convenience, social, and economic impact. Although these QoL domains have been previously identified in other eye diseases, the sub-themes within each QoL domain were unique to uveitis. Participants described a variety of symptoms including increased light sensitivity, blurred vision, pain, redness, and tearing. Participants repeatedly described feeling frustrated due to prognostic uncertainty and associated discomfort. Participants were concerned about the frequent relapses of inflammation, as well as side-effects from long-term systemic medications. Uveitis affected their ability to perform daily tasks such as using computers, driving, and reading books. Direct financial impacts included reduced work hours and the costs of treatment and specialist care.CONCLUSION: Participants with uveitis experience many symptoms in addition to medication-related inconveniences and activity limitations. The QoL issues identified will be used to develop a uveitis-specific QoL item bank.
Subject(s)
Quality of Life , Uveitis , Adult , Focus Groups , Humans , Surveys and Questionnaires , Uveitis/drug therapy , Vision DisordersABSTRACT
Purpose: We are developing item banks assessing the impact of retinal and vitreoretinal diseases (excluding age-related macular degeneration, diabetic retinopathy, and retinal detachment, covered elsewhere) on quality of life (QoL) for adults. This study outlines the first two phases of the multi-stage process: content development and item evaluation.Methods: We grouped retinal and vitreoretinal diseases into hereditary and acquired. Development of the item banks involved two phases: item identification and item evaluation. The items were extracted from three sources: (1) 17 pre-existing PRO instruments, (2) 4 qualitative studies and (3) 79 semi-structured interviews. Item evaluation involved three stages namely, binning (grouping) and winnowing (reduction), expert panel opinion and cognitive interviews.Results: The item identification phase yielded 1,217 items. After three sessions of binning and winnowing, items were reduced to a minimally representative set (n = 411) across nine QoL domains namely, activity limitation, emotional, social, health concerns, symptoms, economic, mobility, convenience, and coping. The hereditary group had a total of 345 items and the acquired group had a total of 257 items. After 23 cognitive interviews items were amended for hereditary diseases resulting in a final set of 345 items and 3 items were amended for acquired diseases, resulting in a final set of 254 items. Overall across nine domains 189 items were common to hereditary and acquired retinal and vitreoretinal diseases.Conclusion: As most of the items were unique to hereditary versus acquired retinal and vitreoretinal disease groups separate item banks are required to capture the QoL impacts for hereditary and acquired retinal and vitreoretinal diseases.