A systematic review of the impact of childhood vision impairment on reading and literacy in education

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)

Role of noninvasive ocular imaging as a biomarker in peripheral artery disease: A systematic review.

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.

Visual acuity and reading print size requirements in children with vision impairment.

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.

A systematic review of the impact of childhood vision impairment on reading and literacy in education.

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.

Visual search and childhood vision impairment: A GAMLSS-oriented multiverse analysis approach.

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.

Quality of life in children with glaucoma: a qualitative interview study in Australia.

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.

Comparison of Anterior Segment Abnormalities in Individuals With FOXC1 and PITX2 Variants.

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.

Assessment of patient-reported outcome measures used in corneal transplantation: a systematic review.

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.

A Review of Ocular Complications Associated with Medications Used for Anxiety, Depression, and Stress.

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.

The Caregiver Experience in Childhood Glaucoma: An Interview Study.

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.

Quality of Life in Adults with Childhood Glaucoma: An Interview Study.

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.

The Impact of Adult Uveitis on Quality of Life: An Exploratory Study.

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.

Identification and Evaluation of Items for Vitreoretinal Diseases Quality of Life Item Banks.

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.

Understanding quality of life impact in people with retinal vein occlusion: a qualitative inquiry.

BACKGROUND: Although being the second most common sight-threatening retinal vascular disease after diabetic retinopathy, the patient-centred impact of retinal vein occlusion has not been well studied. This study aims to understand the quality of life issues in people with retinal vein occlusion using a qualitative methodology. METHODS: In-depth semi-structured interviews were conducted with 17 patients with retinal vein occlusion. All the interviews were digitally recorded and transcribed verbatim. An inductive analytic approach based on the constant comparative method was used for coding, aggregation, and theme development. The qualitative analysis was done using the software NVivo. RESULTS: Participants had a median age of 73 years (range 34-85 years; females, 71 per cent). Six quality of life themes were identified: concerns about the disease progression and treatment outcome (health concerns), emotional responses to the disease (emotional), experiencing a range of symptoms (symptoms), inability to do things as before (activity limitation), adapting to the visual loss (coping), and inconveniences due to the eye condition (convenience). Participants often felt that lasers and injections did not improve their vision. They feared that their eye condition may come back, or the other eye may be affected. They experienced a range of visual symptoms that affected their day-to-day performance, particularly reading small print, and driving at night. Having multiple treatments and frequent eye appointments were major sources of inconvenience. Patients adopted several coping strategies to manage the stress associated with visual loss. CONCLUSIONS: This study shows that several aspects of quality of life are compromised in people with retinal vein occlusion. The findings of this study will be used to identify the item content for a vitreoretinal disease-specific quality of life item bank.

Development and Psychometric Assessment of Novel Item Banks for Hereditary Retinal Diseases.

SIGNIFICANCE: This study develops psychometrically valid item banks across 10 areas of quality of life (QoL) specific to people with hereditary retinal diseases, which will enable clinicians and researchers to explore the impact of hereditary retinal diseases across all aspects of QoL. PURPOSE: The purpose of this study was to assess the psychometric properties of hereditary retinal disease QoL item banks using Rasch analysis and demonstrate the effectiveness of a computerized adaptive testing (CAT) system in obtaining precise measurement of QoL using only a few items. METHODS: The hereditary retinal disease item banks were answered by 233 participants (median age, 58 years; range, 18 to 94 years; female participants, 59%). The hereditary retinal disease item banks cover 10 QoL domains: activity limitation, mobility, emotional, social, convenience, economic, health concerns, visual symptoms, ocular comfort symptoms, and general symptoms. Rasch analysis assessed the psychometric properties of the 10 item banks and provided item calibrations for the development of CAT. Computerized adaptive testing simulations were performed to calculate the average number of items required to gain precise measurement of each QoL domain. RESULTS: The convenience, economic, visual symptoms, and the social domains formed unidimensional scales. However, the activity limitation and health concerns domains demonstrated multidimensionality and required major modifications to resolve this, which resulted in four new QoL domains, namely, reading, driving, lighting, and concerns about the disease progression. In total, 10 item banks underwent CAT simulation testing, which indicated that 8 to 12 items were required to gain precise measurement of each QoL domain. CONCLUSIONS: We have developed 10 psychometrically valid item banks to measure the QoL domains relevant to people with hereditary retinal diseases. On average, only 5 and 10 items were required to gain measurement at moderate and high precision, respectively.

Developing an item bank to measure the coping strategies of people with hereditary retinal diseases.

PURPOSE: Our understanding of the coping strategies used by people with visual impairment to manage stress related to visual loss is limited. This study aims to develop a sophisticated coping instrument in the form of an item bank implemented via Computerised adaptive testing (CAT) for hereditary retinal diseases. METHODS: Items on coping were extracted from qualitative interviews with patients which were supplemented by items from a literature review. A systematic multi-stage process of item refinement was carried out followed by expert panel discussion and cognitive interviews. The final coping item bank had 30 items. Rasch analysis was used to assess the psychometric properties. A CAT simulation was carried out to estimate an average number of items required to gain precise measurement of hereditary retinal disease-related coping. RESULTS: One hundred eighty-nine participants answered the coping item bank (median age = 58 years). The coping scale demonstrated good precision and targeting. The standardised residual loadings for items revealed six items grouped together. Removal of the six items reduced the precision of the main coping scale and worsened the variance explained by the measure. Therefore, the six items were retained within the main scale. Our CAT simulation indicated that, on average, less than 10 items are required to gain a precise measurement of coping. CONCLUSIONS: This is the first study to develop a psychometrically robust coping instrument for hereditary retinal diseases. CAT simulation indicated that on an average, only four and nine items were required to gain measurement at moderate and high precision, respectively.

Assessment of patient-reported outcomes in retinal diseases: a systematic review.

Advances in the understanding of the genetic, molecular, and cellular biology of retinal diseases have led to the development of new treatments. These expanding treatment options demand appropriate outcome measures for studies of treatment benefit including patient-reported outcomes (PROs). A plethora of PRO instruments assess impacts of retinal diseases from the patients' perspectives. We review all the studies that implemented PRO assessment in retinal diseases and also discuss quality assessment of the PRO instruments. We also include qualitative studies that explored quality of life impact on people with retinal diseases. Most studies used PRO instruments not specifically developed for retinal diseases (non-disease specific), nor have they undergone comprehensive validation in this disease group. A few retina-specific PRO instruments are available, but they suffer from limited content coverage of quality of life. Finally, we discuss the need for a new comprehensive and technologically advanced PRO instrument to assess quality of life impacts in retinal diseases.

Exploring the quality of life issues in people with retinal diseases: a qualitative study.

BACKGROUND: The lack of an appropriate retina-specific patient-reported outcome instrument restricts the understanding of the full impact of hereditary retinal diseases and other less common but potentially blinding acquired retinal diseases such as, vascular occlusions, epiretinal membrane, macular hole, central serous retinopathy and other vitreoretinopathies on quality of life. This study aims to explore the quality of life issues in people with hereditary retinal diseases and acquired retinal diseases to develop disease-specific patient-reported outcome instruments. METHODS: A qualitative research methodology to understand the lived experiences of people with retinal diseases was carried out. Data were collected through semistructured interviews. The coding, aggregation and theme development was carried out using the NVivo -10 software. RESULTS: Seventy-nine interviews were conducted with participants with hereditary retinal diseases (n = 32; median age = 57 years) and acquired retinal diseases (n = 47; median age = 73 years). We identified nine quality of life themes (domains) relevant to people with retinal diseases. Difficulty in performing important day-to-day activities (activity limitation) was the most prominent quality of life issue in the hereditary retinal diseases group whereas concerns about health, disease outcome and personal safety (health concerns) was the most prominent quality of life issue in the acquired retinal diseases group. Participants with hereditary retinal diseases had more issues with social interaction (social well-being), problems with mobility and orientation (mobility), and effect on work and finance (economic) than participants with acquired retinal diseases. On the contrary, participants with acquired retinal diseases reported more inconveniences (conveniences) than participants with hereditary retinal diseases, which were mostly attributed to treatment. Participants with hereditary retinal diseases were coping better compared to participants with acquired retinal diseases. CONCLUSIONS: Our study found that participants with both hereditary and acquired retinal diseases are living with myriad of disease-specific quality of life issues. Many of these issues are completely different and unique to each disease group. Hence, these group of diseases would need separate patient-reported outcome instruments to capture the disease-specific quality of life impacts.