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Burden and Impact of Vision/Eye Conditions

Measuring vision-related quality of life and functional vision - child vision PROMs

Why is this research needed?
The impact of childhood visual impairment is far-reaching. Most children and young people with visual impairment are affected from infancy and will face significant lifelong challenges through the impact on development, education and social and emotional wellbeing. The use of patient-reported outcome measures (PROMs) is now well-established in both clinical practice and research evaluating new treatments. PROMs can be used as adjuncts to clinical measures, to monitor changes in quality of life in individual children. However, reliable and valid measures of vision-related quality of life and functional vision remain scarce. 

What have we done and what are we going to do?
We have used a combination of qualitative and quantitative methods to develop two child-appropriate, vision-specific PROMs which measure vision-related quality of life (VQoL_CYP) and functional vision (FVQ_CYP). There are two age-versions of each, one suitable for children aged 8-12 years, the other for young people aged 13 up to 18 years. 

CHILD VISION PATIENT-REPORTED OUTCOME MEASURES GROUP

Ameenat Lola Solebo, Phillippa Cumberland, Naomi Dale, Peng Tee Khaw, Gillian Lewando-Hundt, Alki Liasis, Anthony Moore, Alison Salt, Mario Cortina-Borja, Valerija Tadić, Alexandra Robertson and Jugnoo Rahi.

OUTPUTS

Peer-reviewed papers

  1. Robertson AO, Tadić V, Horvat-Gitsels LA, Cortina-Borja M, Rahi JS. Differences in self-rated versus parent proxy-rated vision-related quality of life and functional vision of visually impaired children. American Journal of Ophthalmology, 2021; 230:167-177. DOI: 10.1016/j.ajo.2021.05.017. Best Output Award 2020/21 competition at the Institute of Lifecourse Development at University of Greenwich. 
  2. Robertson AO, Horvat-Gitsels LA, Cortina-Borja M, Rahi JS. Distribution and associations of vision-related quality of life and functional vision of children with visual impairmentBritish Journal of Ophthalmology Published Online First: 07 April 2021. DOI: 10.1136/bjophthalmol-2020-318473
  3. Tadić, V; Robertson, AO; Cortina-Borja, M; Rahi, JS for the Child Vision Patient-Reported Outcome Measures group. An age- and stage-appropriate patient-reported outcome measure of vision-related quality of life of children and young people with visual impairment. Ophthalmology, 2020;127(2):249-260. DOI: 10.1016/j.ophtha.2019.08.033
  4. Robertson, AO; Tadić, V; Rahi, JS. for the Child Vision Patient-Reported Outcome Measures group. Transition from paediatric to adult ophthalmology services: what matters most to young people with visual impairment. Eye, 2017;32:406-414. DOI: 10.1038/eye.2017.203
  5. Tadić, V; Rahi, JS. One size doesn’t fit all: time to revisit patient-reported outcome measures (PROMs) in paediatric ophthalmology? Eye, 2017;31:511-518. DOI: 10.1038/eye.2016.316
  6. Tadić, V; Cumberland, P; Lewando-Hundt, G; Rahi, JS. Do visually impaired children and their parents agree on the child’s vision-related quality of life and functional vision? British Journal of Ophthalmology, 2017;101:244-250. DOI: 10.1136/bjophthalmol-2016-308582
  7. Tadić, V; Cooper, A; Cumberland, P; Lewando-Hundt, G; Rahi, JS. on behalf of the VQoL group. Measuring the quality of life of visually impaired children: first stage psychometric evaluation of the novel VQoL_CYP instrument. PLoS One, 2016;11(2):e0146225. DOI: 10.1371/journal.pone.0146225
  8. Tadić ,V; Lewando-Hundt, G; Keeley, S; Rahi JS. on behalf of the VQoL group. Seeing it my way: living with childhood onset visual disability. Child: Care Health and Development, 2014;41(1):239-248. DOI: 10.1111/cch.12158
  9. Tadić, V; Cooper, A; Cumberland, P; Lewando-Hundt, G; Rahi, JS. on behalf of the VQoL group. Development of the functional vision questionnaire for children and young people with visual impairment: the FVQ_CYP. Ophthalmology, 2014;120(12):2725-2732. DOI: 10.1016/j.ophtha.2013.07.055
  10. Tadić, V; Hogan, A; Sobti, N; Knowles, R; Rahi, JS. Patient reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review. British Journal of Ophthalmology, 2013;97:1369-1381. DOI: 10.1136/bjophthalmol-2013-303350
  11. Rahi, JS; Tadić, V; Keeley, S; Lewando-Hundt, G. on behalf of the VQoL group. Capturing children and young people's perspectives to identify the content for a novel vision related quality of life instrument. Ophthalmology, 2011;118(5):819-824. DOI: 10.1016/j.ophtha.2010.08.034
  12. Tadić, V; Hamblion, EL; Keeley, S; Cumberland, P; Lewando-Hundt, G; Rahi JS. on behalf of the VQoL group. 'Silent voices' in research with visually impaired children: ethnicity and socio-economic variation in participation in studies of quality of life. Investigative Ophthalmology and Vision Science, 2011;50(13):4694. DOI: 10.1167/iovs.09-4522

Further information
Funders: Fight for Sight UK (Project grant), University College London Great Ormond Street Institute of Child Health Clinical Health Research Trust PhD Studentship, Great Ormond Street Hospital Charity (Clinical Research Starter grant)

Contact: Jugnoo Rahi  

Promoting vision-related quality of life

Why is this research needed?
There is a significant variation in how individual children and young people adapt to living with visual impairment (VI) and how they self-regard their quality of life (QoL). We have previously shown QoL to be unrelated to VI severity. However, the underlying factors that influence, both positively and negatively, the level and nature of adjustment, good self-perceived QoL and coping strategies in individual children/young people and their families have otherwise received scant attention. Thus, currently, there is a very limited evidence base from which interventions to facilitate adjustment and promote good QoL can be developed.

What have we done and what are we going to do?
Our group has developed two vision-related patient-reported outcome measures (PROMs) that can be used to monitor changes in quality of life in individual children/young people with visual impairment. This PhD project is a first step in the process of developing interventions to promote good quality of life outcomes specific to children and young people with visual impairment. The current project will:

  • Identify the key predictive factors that shape the quality of life outcomes of these children/young people.
  • Identify the critical time points at which interventions may moderate the effect of these factors.
  • Propose an intervention that will improve the quality of life for children/young people with VI and their families.

Who are we looking for?

We would like to hear from you if you are

  • Someone living in England or Wales
  • 8 to 18 years old
  • Have visual impairment caused by any medical condition

OR you are

  • Parent or caregiver of a child aged 8 to 18 years who has visual impairment

I’m interested! What should I do now?

First, we kindly ask you to fill in a few questions that will tells us a bit about you to help us make sure this study is right for you. To answer these questions, please go to this website.

 

Further information

You can also hear more about this project in this video.

Funders: This research is being undertaken as a PhD project by Ana Šemrov who is funded by Fight for Sight (PhD Studentship Grant) and the Ulverscroft Foundation

Academic Supervisors: Jugnoo Rahi, Roz Shafran, Rachel Knowles, Lola Solebo, Mario Cortina-Borja, Val Tadić

Contact: Ana Šemrov or Jugnoo Rahi

Privacy notice: If you would like to find out more about what data will be used in this project, or how it will be used and stored, please read the  

 

We have started looking at medical records at Great Ormond Street Hospital and Moorfields Eye Hospital to identify our participants
We would like to include all children and young people aged at least 8 years and up to 18 years who have a visual impairment. We would also like to include parents/carers of visually impaired children and young people aged up to 18 years.

We will be working with the clinical staff looking at medical records at this hospital to identify children and young people to contact to see if they would be willing to take part in this research. If you want more information about the study or would NOT like to be considered for this study please let us or your consultant know. This will not affect your care in any way.

Impact of amblyopia

Moorfields Amblyopia Treatment Outcomes Database studies (MATOD)

Why is this research needed?
Amblyopia is an eye and brain condition that affects about 230,000 children under 7 years in the UK. It affects the way eyesight develops, causing poor vision. There is a lack of evidence about how well treatments work, particularly for older children.

What are we going to do?
Using ‘real-world’ data, we will investigate associations between age, clinical features and amblyopia treatment outcomes. These findings will provide new evidence to aid clinicians in making decisions about referral for treatment and subsequent management in children with amblyopia aged 4-16 years.

OUTPUTS

Forthcoming

Further information
Funders: Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames, through a personal award to Dipesh Patel.  

Contact: Dipesh Patel 


Optimising Management of Amblyopia through Collaborative Science (OMACS)

Why is this research needed?
Amblyopia is an eye and brain condition that affects about 230,000 children under 7 years in the UK. It affects the way eyesight develops, causing poor vision. The first stage of amblyopia treatment involves prescribing glasses, if required, and monitoring if vision improves over time (usually 3-6 months) as the brain adapts to a clear image.

In children whose vision does not improve to normal levels with glasses alone, further treatment is required. This is most commonly achieved by covering the better-seeing or normal eye for a number of hours per day, called “patching” or “occlusion therapy”.

Patching is often difficult for children and many suffer from bullying. Treatment is often unsuccessful.

Research over the last 20 years has focussed on investigating the minimum number of hours of patching required each day to achieve a treatment effect. Evidence shows 2 hours daily patching (low-intensity treatment) works, but usually takes a number of months, and sometimes years. Adherence to treatment drops dramatically over time. 

It costs the NHS approximately £314m to treat 230,000 children with amblyopia. Full-time patching (high-intensity treatment) could produce faster improvements in vision, and better final outcomes, shortening treatment and reducing costs, but there isn’t enough information about the treatment to appropriately design a clinical trial to compare low vs. high-intensity patching.

What are we going to do?
For this study, we will:

  1. Conduct a small-scale feasibility study to see if it’s possible to run a larger trial. We will approach children and their families at Moorfields Eye Hospital and ask them to take part in the study. They will be randomly asked to perform either low or high-intensity patching. Treatment will be monitored with an electronic device in their patch. Children will have their vision tested in clinics for 12 months.
  2. Develop ways to address known problems with treatment adherence. We will interview patients and their parents and work together with the public, psychologists and specialist implementation scientists to improve treatment adherence.
  3. Design a clinical trial and apply for funding. We will use the results from the feasibility study to design the future trial. Patients, their parents and the public have been involved in the design of the proposed study and will provide oversight of all future work.
OMACS1F STUDY TEAM

Dipesh Patel, Mario Cortina-Borja, Ted Garway-Heath, Valerija Tadić (University of Greenwich), Tayana Soukup (KCL), Rachael Hunter and Jugnoo Rahi.

OUTPUTS

Forthcoming

Further information
Funders: National Institute for Health Research (NIHR) through an Advanced Fellowship awarded to Dipesh Patel who will undertake this research at GOS ICH while continuing to work as an Orthoptist at Moorfields Eye Hospital NHS Foundation Trust.

Contact: Dipesh Patel 

British Childhood Visual Impairment and Blindness Study 2 (BCVIS2)

Why is this research needed?
It is estimated that around two per 1,000 children living in Britain today have bilateral visual impairment or blindness (VI/SVIBL). Although VI/SVIBL in childhood is rare, the impact on aspects of development, education and activities of everyday life is significant. There is a paucity of population-based, representative epidemiological data on children newly diagnosed with VI/SVIBL in the U.K. BCVIS2 aimed to determine the: 

  • Incidence
  • Causes
  • Mode and context of detection
  • Management
  • Short term health and social outcomes of all-cause, full-spectrum VI/SVIBL in childhood.

What have we done?
BCVIS was carried out using established surveillance methodologies through dual-source national surveillance through the British Paediatric (BPSU) and British Ophthalmological (BOSU) Surveillance Units to identify all children newly diagnosed as being visually impaired, severely visually impaired or blind during the 12 month period. Data at diagnosis and one year later were collected using standardised questionnaires completed by managing clinicians using clinical data recorded during the course of usual care.

It is hoped that the findings from this study will inform planning of prevention and treatment strategies and targeting of screening, ‘map’ clinical and public health services involved in detection and management thereby informing the commissioning and delivery of NHS services, and present an evidence base on the sociodemographic variations in childhood visual disability to inform national public health policies.

BCVIS INTEREST GROUP (BCVISG)

The study is supported by a multidisciplinary interest group consisting of over 100 members, including ophthalmologists, orthoptists, paediatricians and researchers with an interest in the management of children with visual impairment and blindness. 

OUTPUTS
  1. Teoh L, Rahi J, Solebo A, et al. 011 The British Childhood Visual Impairment and Blindness Study (BCVIS2): 1-year outcomes. Archives of Disease in Childhood 2018;103:A5. DOI: 10.1136/goshabs.11
  2. Teoh L, Solebo A, Cumberland P, Sargent J, Rahi J; The British Childhood Visual Impairment and Blindness Study 2 (BCVIS2). Invest. Ophthalmol. Vis. Sci. 2018;59(9):164. ARVO Annual Meeting Abstract

Further information
Study details: here
Funders: Fight for Sight
Contact: Jugnoo Rahi

    Health, education and social outcomes of children with visual impairment and blindness (VI/SVIBL)

    Why is this research needed?
    Our understanding of the health and educational trajectories from the point of diagnosis of full-spectrum visual impairment (VI/SVIBL) across childhood and into adulthood is lacking. Through this study, we hope to provide data which are useful to a broad audience, in particular to health policy decision-makers. Outcomes can be used alongside findings from research on interventions to enable cost-effectiveness analyses of upcoming treatments or other interventions for VI/SVIBL.

    What have we done and what are we going to do?
    Through two previous national surveillance studies (BCVIS and BCVIS2) we collected cross-sectional socio-demographic and clinical data on all children newly diagnosed with VI/SVIBL in the years 2000 and 2016.

    We are now looking to carry out bespoke record linkage of BCVIS and BCVIS2 participants living in England to the national administrative hospital (Hospital Episodes Statistics) and education (National Pupil Database) datasets to obtain observational follow up data on this rare group of children. 

    This longitudinal data will allow us to monitor the health and educational outcomes of children newly diagnosed with visual impairment and blindness from birth, across childhood and into early adulthood. There is also a lack of data on the economic burden associated with visual impairment and blindness in childhood. We will determine the long-term outcomes and associated medical costs to the healthcare system for children with visual disability to inform national health policy and identify areas for improvement.

    Further information
    Funders: this research is being carried out as part of the PhD project by Lucie Teoh who is supported by an MRC Doctoral Training Studentship through the UCL Birkbeck Doctoral Training Programme. 

    Academic Supervisors: Jugnoo Rahi and Lola Solebo

    Contact: Lucie Teoh or Jugnoo Rahi

    Privacy notice: If you would like to find out more about what data will be used in this project, or how it will be used and stored, please read the Privacy Notice.

    Unicorns: Uveitis in childhood national prospective cohort study 

    Why is this research needed?
    Childhood uveitis is a rare inflammatory eye disease. One in every five affected children loses vision in at least one eye before reaching the age of 16, due to structural damage caused by uncontrolled inflammation. The uveitis can continue to be active into mid-adulthood. Currently: 

    • We do not understand the causes of disease
    • We cannot predict response to our existing therapies
    • We cannot predict long term outcomes

    Newly emerging ‘biological’ therapies have proven themselves to be effective for certain populations of children with uveitis, but:

    • We do not know if children with milder disease truly benefit from these (and other) powerful systemic medications which require frequent blood monitoring, frequent hospital admissions, and carry significant short- and long-term risk of adverse events.

    What are we going to do?
    UNICORNS is a UK multicentre observational study which will recruit children newly diagnosed with uveitis, collect the details of their family, birth and medical history, and watch their disease over time (a ‘longitudinal inception cohort study’). This study will allow us to identify the predictors of outcome, including response to therapy. 

    PAEDIATRIC OCULAR INFLAMMATION GROUP (POIG) 

    This study is supported by POIG a multidisciplinary, national group which supports the development of the evidence base necessary to inform management strategies, service commissioning and service delivery for children with ocular inflammatory disorders.

    STUDY DATES

    Starting in the summer of 2020

    Further Information
    Funders: this research is being carried out at GOS ICH UCL with the support of an NIHR Clinician Scientist award to Ameenat Lola Solebo (CS-2018-18-ST2-005) who continues to also work as a Consultant Ophthalmologist at Great Ormond Street Hospital NHS Foundation Trust.

    Contact: Lola Solebo

    1946, 1958 and 1970 British birth cohort studies

    Why is this research needed? 
    There is limited information about whether and how vision and eye conditions impact health and social outcomes and about inequalities in visual health during childhood and in adult life.

    Such research is best conducted using large general population-based studies and within the UK there are several cohorts and other longitudinal studies which offer appropriate opportunities including the three national British birth cohort studies (1946, 1958 and 1970 birth cohorts). This is an ongoing programme of research which comprises distinct projects drawing on different cohort studies within CLOSER.

    What have we done?
    We have investigated temporal trends in visual function in childhood, demonstrating declining visual function and increasing inequalities.

    We have completed methodological work to inform a new WHO international taxonomy of myopia.

    OUTPUTS 
    1. Cumberland PM, Bountziouka V, Rahi JS. Impact of varying the definition of myopia on estimates of prevalence and associations with risk factors: time for an approach that serves research, practice and policy. Br J Ophthalmol. 2018;102:1407–1412. DOI: 10.1136/bjophthalmol-2017-311557
    2. Bountziouka V, Cumberland PM, Rahi JS. Trends in Visual Health Inequalities in Childhood Through Associations of Visual Function With Sex and Social Position Across 3 UK Birth Cohorts. JAMA ophthalmology. 2017 Sep 1;135(9):954-61. DOI: 10.1001/jamaophthalmol.2017.2812

    Further information
    Contact: Jugnoo Rahi

    Visual impairment and eye conditions in Millennium Cohort Study 

    What have we done and what are we going to do?
    We have investigated the frequency and associations of eye conditions and the prevalence and risk factors for strabismus. 

    We are now using data collected at different time points during childhood and adolescence, to address the following aims:

    • To evaluate the associations between amblyopia and school readiness and cognitive performance during early schooling.
    • To evaluate the educational trajectories at key stages during primary and secondary schooling by common vision disorders such as amblyopia.
    • To assess the impact of vision impairment on physical activity in childhood and adolescence.
    • To assess the impact of vision impairment on intentions and ambitions for education, career and social outcomes. 
    • To assess the associations between vision and psychological, emotional, and behavioural outcomes in adolescence.
    OUTPUTS
    1. Horvat-Gitsels LA, Corina-Borja M, Rahi JS (2021). The impact of impaired vision on physical activity in childhood and adolescence. Findings from the Millennium Cohort Study. British Journal of Ophthalmology. DOI: 10.1136/bjophthalmol-2021-320315
    2. Gitsels, L. A., Cortina-Borja, M., & Rahi, J. S. (2020). Is amblyopia associated with school readiness and cognitive performance during early schooling? Findings from the Millennium Cohort Study. PLOS ONE, 15 (6), e0234414. DOI: 10.1371/journal.pone.0234414
    3. Cumberland, P. M., Pathai, S., Rahi, J. S., & Millennium Cohort Study Child Health Group. (2010). Prevalence of eye disease in early childhood and associated factors: findings from the millennium cohort study. Ophthalmology, 117 (11), 2184-90. DOI: 10.1016/j.ophtha.2010.03.004
    4. Pathai, S., Cumberland, P. M., & Rahi, J. S. (2010). Prevalence of and early-life influences on childhood strabismus: findings from the Millennium Cohort Study. Arch Pediatr Adolesc Med, 164 (3), 250-257. DOI: 10.1001/archpediatrics.2009.297

    Further information
    This research is supported by core funding for Ulverscroft Vision Research Group.

    Contact: Jugnoo Rahi

    Inequalities in visual health - UK Biobank cohort study

    What have we done?
    Major knowledge gaps included the distribution of visual function and the frequency of different levels of sight impairment – from the level that might impact on driving or other activities of daily living up to blindness. In addition, more broadly, the biological, social and lifestyle factors that might influence the development of visual function and the risk of sight impairment as well as the general and mental health, social circumstance and ethnic diversity of adults with impaired sight in the UK today. Furthermore, using short-sightedness (myopia) in particular, as a model of a ‘complex’ eye disease (i.e. influenced by genes and the environment) we have investigated the complex relationships between myopia and a diverse range of risk factors over the life course. The aim was to identify, where possible, risk factors that can be modified or biological processes and pathways that would merit further research. Our findings have provided information to support advocacy for equitable and appropriate allocation of resources for adults with impaired vision. Importantly this project has also extended methods developed in prior cohort study research related to the epidemiological and statistical approaches to studying complex ocular disorders, notably in the use of self-report of vision and eyesight in a research context, which ultimately will benefit ophthalmic epidemiology more generally. 

    Outputs
    1. Khawaja AP, Chua S, Hysi PG, Georgoulas S, Currant H, Fitzgerald TW, Birney E, Ko F, Yang Q, Reisman C, Garway-Heath DF. Comparison of Associations with Different Macular Inner Retinal Thickness Parameters in a Large Cohort: The UK Biobank. Ophthalmology. 2020 Jan 1;127(1):62-71. DOI: 10.1016/j.ophtha.2019.08.015
    2. Pozarickij A, Williams C, Hysi PG, Guggenheim JA. Quantile regression analysis reveals widespread evidence for gene-environment or gene-gene interactions in myopia development. Communications biology. 2019 May 6;2(1):1-8. DOI: 10.1038/s42003-019-0387-5
    3. Cumberland PM, Rahi JS. Visual function, social position, and health and life chances: the UK biobank study. JAMA ophthalmology. 2016 Sep 1;134(9):959-66. DOI: 10.1001/jamaophthalmol.2016.1778
    4. Cumberland PM, Bao Y, Hysi PG, Foster PJ, Hammond CJ, Rahi JS, Eyes UB, Vision Consortium. Frequency and distribution of refractive error in adult life: Methodology and findings of the UK Biobank study. PloS one. 2015;10(10). DOI: 10.1371/journal.pone.0139780.  
    5. Cumberland PM, Chianca A, Rahi JS. Accuracy and utility of self-report of refractive error. JAMA ophthalmology. 2016 Jul 1;134(7):794-801. DOI: 10.1001/jamaophthalmol.2016.1275
    6. Cumberland PM, Chianca A, Rahi JS, Eyes UB, Vision Consortium. Laser refractive surgery in the UK Biobank study: Frequency, distribution by sociodemographic factors, and general health, happiness, and social participation outcomes. Journal of Cataract & Refractive Surgery. 2015 Nov 1;41(11):2466-75. DOI: 10.1016/j.jcrs.2015.05.040

    Further information
    Contact: Jugnoo Rahi


     

    Causes and Prevention of Vision/Eye Conditions

    British Childhood Visual Impairment and Blindness Study 2 (BCVIS2)

    Why is this research needed?
    It is estimated that around two per 1,000 children living in Britain today have bilateral visual impairment or blindness (VI/SVIBL). Although VI/SVIBL in childhood is rare, the impact on aspects of development, education and activities of everyday life is significant. There is a paucity of population-based, representative epidemiological data on children newly diagnosed with VI/SVIBL in the U.K. BCVIS2 aimed to determine the: 

    • Incidence
    • Causes
    • Mode and context of detection
    • Management
    • Short term health and social outcomes of all-cause, full spectrum VI/SVIBL in childhood.

    What have we done?
    BCVIS was carried out using established surveillance methodologies through dual-source national surveillance through the British Paediatric (BPSU) and British Ophthalmological (BOSU) Surveillance Units to identify all children newly diagnosed as being visually impaired, severely visually impaired or blind during the 12 month period. Data at diagnosis and one year later were collected using standardised questionnaires completed by managing clinicians using clinical data recorded during the course of usual care.

    It is hoped that the findings from this study will inform planning of prevention and treatment strategies and targeting of screening, ‘map’ clinical and public health services involved in detection and management thereby informing the commissioning and delivery of NHS services, and present an evidence base on the sociodemographic variations in childhood visual disability to inform national public health policies.

    BCVIS INTEREST GROUP (BCVISG)

    The study is supported by a multidisciplinary interest group consisting of over 100 members, including ophthalmologists, orthoptists, paediatricians and researchers with an interest in the management of children with visual impairment and blindness.

    OUTPUTS
    1. Teoh L, Rahi J, Solebo A, et al. 011 The British Childhood Visual Impairment and Blindness Study (BCVIS2): 1-year outcomes. Archives of Disease in Childhood 2018;103:A5. DOI: 10.1136/goshabs.11
    2. Teoh L, Solebo A, Cumberland P, Sargent J, Rahi J; The British Childhood Visual Impairment and Blindness Study 2 (BCVIS2). Invest. Ophthalmol. Vis. Sci. 2018;59(9):164. ARVO Annual Meeting Abstract

    Further information
    Study details: here
    Funders: Fight for Sight
    Contact: Jugnoo Rahi

     

    Health, education and social outcomes of children with visual impairment and blindness (VI/SVIBL)

    Why is this research needed?
    Our understanding of the health and educational trajectories from the point of diagnosis of full-spectrum visual impairment (VI/SVIBL) across childhood and into adulthood is lacking. Through this study, we hope to provide data which are useful to a broad audience, in particular to health policy decision-makers. Outcomes can be used alongside findings from research on interventions to enable cost-effectiveness analyses of upcoming treatments or other interventions for VI/SVIBL.

    What have we done and what are we going to do?
    Through two previous national surveillance studies (BCVIS and BCVIS2) we collected cross-sectional socio-demographic and clinical data on all children newly diagnosed with VI/SVIBL in the years 2000 and 2016.

    We are now looking to carry out bespoke record linkage of BCVIS and BCVIS2 participants living in England to national administrative hospital (Hospital Episodes Statistics) and education (National Pupil Database) datasets to obtain observational follow up data on this rare group of children. 

    This longitudinal data will allow us to monitor the health and educational outcomes of children newly diagnosed with visual impairment and blindness from birth, across childhood and into early adulthood. There is also a lack of data on the economic burden associated with visual impairment and blindness in childhood. We will determine the long-term outcomes and associated medical costs to the healthcare system for children with visual disability to inform national health policy and identify areas for improvement.

    Further information
    Funders: this research is being carried out as part of the PhD project by Lucie Teoh who is supported by an MRC Doctoral Training Studentship through the UCL Birkbeck Doctoral Training Programme. 

    Academic Supervisors: Jugnoo Rahi and Lola Solebo

    Contact: Lucie Teoh or Jugnoo Rahi

    Privacy notice: If you would like to find out more about what data will be used in this project, or how it will be used and stored, please read the Privacy Notice.

    Moorfields Amblyopia Treatment Outcomes Database studies (MATOD)

    MATOD1: The effect of age on occlusion therapy outcomes in children aged 4-16 years


    Why is this research needed?
    Amblyopia is an eye and brain condition that affects about 230,000 children under 7 years in the UK. It affects the way eyesight develops, causing poor vision. There is a lack of evidence about how well treatments work, particularly for older children.

    What are we going to do?
    Using ‘real-world’ data, we will investigate associations between age, clinical features and amblyopia treatment outcomes. These findings will provide new evidence to aid clinicians in making decisions about referral for treatment and subsequent management in children with amblyopia aged 4-16 years.

    Outputs

    Forthcoming

    Further information
    Funders: Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames, through a personal award to Dipesh Patel.  

    Contact: Dipesh Patel 

    Optimising Management of Amblyopia through Collaborative Science (OMACS)

    OMACS1F: Low vs. high intensity occlusion therapy for the management of mild/moderate amblyopia in children aged 4-17 years: A randomised-controlled feasibility trial


    Why is this research needed?
    Amblyopia is an eye and brain condition that affects about 230,000 children under 7 years in the UK. It affects the way eyesight develops, causing poor vision. The first stage of amblyopia treatment involves prescribing glasses, if required, and monitoring if vision improves over time (usually 3-6 months) as the brain adapts to a clear image.

    In children whose vision does not improve to normal levels with glasses alone, further treatment is required. This is most commonly achieved by covering the better-seeing or normal eye for a number of hours per day, called “patching” or “occlusion therapy”.

    Patching is often difficult for children and many suffer from bullying. Treatment is often unsuccessful.

    Research over the last 20 years has focussed on investigating the minimum number of hours of patching required each day to achieve a treatment effect. Evidence shows 2 hours daily patching (low-intensity treatment) works, but usually takes a number of months, and sometimes years. Adherence to treatment drops dramatically over time. 

    It costs the NHS approximately £314m to treat 230,000 children with amblyopia. Full-time patching (high-intensity treatment) could produce faster improvements in vision, and better final outcomes, shortening treatment and reducing costs, but there isn’t enough information about the treatment to appropriately design a clinical trial to compare low vs. high-intensity patching.

    What are we going to do?
    For this study, we will:

    1. Conduct a small-scale feasibility study to see if it’s possible to run a larger trial.
      We will approach children and their families at Moorfields Eye Hospital and ask them to take part in the study. They will be randomly asked to perform either low or high-intensity patching. Treatment will be monitored with an electronic device in their patch. Children will have their vision tested in clinics for 12 months.
    2. Develop ways to address known problems with treatment adherence.
      We will interview patients and their parents and work together with the public, psychologists and specialist implementation scientists to improve treatment adherence.
    3. Design a clinical trial and apply for funding.
      We will use the results from the feasibility study to design the future trial. Patients, their parents and the public have been involved in the design of the proposed study, and will provide oversight of all future work.
    OMACS1F study team

    Dipesh Patel, Mario Cortina-Borja, Ted Garway-Heath, Valerija Tadić (University of Greenwich), Tayana Soukup (KCL), Rachael Hunter and Jugnoo Rahi.

    Outputs

    Forthcoming

    Further information
    Funders: National Institute for Health Research (NIHR) through an Advanced Fellowship awarded to Dipesh Patel who will undertake this research at GOS ICH while continuing to work as an Orthoptist at Moorfields Eye Hospital NHS Foundation Trust.

    Contact: Dipesh Patel 

    UK and Ireland study of primary intraocular lens implantation in children under 2 years old with congenital or infantile cataract: IoLunder2

    Why is this research needed?
    Congenital and infantile cataract (cloudy lens) is the most important cause of avoidable childhood blindness. In the UK, all infants are examined for cataract at birth and again at 6-8 weeks of age as part of the National Screening Committee’s Newborn and Infant Physical Examination Programme (NIPE).

    Primary intraocular lens, or IoL, implantation (to replace the focusing power lost when the cataract is removed) has been routine in adult practice for some decades but was a recent innovation for infants and young children aged under 2 years. Early enthusiasts hypothesised that IoLs would improve visual outcomes (over the long established practice of correcting infant’s vision with contact lenses) and protect against post-operative glaucoma, the main blinding complication of infantile cataract surgery. IoLs were rapidly adopted internationally for infants with cataract despite an absence of robust evidence regarding the risks or benefits. IoLunder2 aimed to provide that evidence and is the only national investigation of outcomes following surgery with and without primary intraocular lens (IoL) implantation in children under 2 years with bilateral or unilateral cataract.

    What have we done and what are we going to do?
    IoLunder2 is a bi-national observational inception cohort study, supported by the British Isles Congenital Cataract Interest Group (BCCIG).

    • Eligible children were identified through active surveillance through the BCCIG. These were children aged 2 years or younger who had cataract surgery concurrently with intraocular lens implantation or conventional treatment - aphakic correction with contact lenses or glasses between Jan 1, 2009, and Dec 31, 2010.
    • Standardised data collection was undertaken using study-specific proforma developed, piloted and refined through the BCCIG.  
    • Multilevel multivariable regression analysis is used to quantify the association of intraocular lens implantation with both visual outcome and the incidence of adverse events.
    • Further follow up of the cohort is planned.
    BCCIG study group

    The British Isles Congenital Cataract Interest Group (BCCIG) is a collaborative clinical research network, comprising 163 consultant ophthalmologists. The BCCIG, established by Prof Rahi (senior investigator on IoLunder2) in 1995, has published extensively on disease frequency, causes and outcomes. 

    Outputs 

    Key paper 

    1. Solebo AL, Cumberland P, Rahi JS; British Isles Congenital Cataract Interest Group. 5-year outcomes after primary intraocular lens implantation in children aged 2 years or younger with congenital or infantile cataract: findings from the IoLunder2 prospective inception cohort study. Lancet Child Adolesc Health. 2018 Dec;2(12):863-871. DOI: 10.1016/S2352-4642(18)30317-1

    Other peer-reviewed papers

    1. Solebo AL, Rahi JS; British Isles Congenital Cataract Interest Group. Visual axis opacity following IoL implantation in children aged under 2 years: Findings from the IoLunder2 cohort study. Ophthalmology. 2020. DOI: 10.1016/j.ophtha.2020.02.038
    2. Solebo AL, Rahi JS; British Isles Congenital Cataract Interest Group. Glaucoma following cataract surgery in the first two years of life: frequency, risk factors and outcomes from IoLunder2. Br J Ophthalmol, 2019. DOI: bjophthalmol-2019-314804
    3. Solebo AL, Russell-Eggitt I, Cumberland P, Rahi JS. Congenital cataract associated with persistent fetal vasculature: findings from IoLunder2. Eye. 2016;30(9):1204-9. DOI: 10.1038/eye.2016.159
    4. Solebo AL, Russell-Eggitt I, Cumberland PM, Rahi JS. Risks and outcomes associated with primary intraocular lens implantation in children under 2 years of age: The IoLunder2 cohort study. British Journal of Ophthalmology. 2015;99:1471-6. DOI: 10.1136/bjophthalmol-2014-306394 (Editor’s choice publication)
    5. Solebo AL, Russell-Eggitt I, Rahi JS. Accuracy of routine data on paediatric cataract in the UK compared to active surveillance: Lessons from the IOLu2 study. British Journal of Ophthalmology. 2013;97(6):757-9. DOI: 10.1136/bjophthalmol-2012-302679
    6. Solebo AL, Russell-Eggitt I, Nischal KK, Moore AT, Cumberland P, Rahi J, and British Isles Congenital Cataract Interest Group (BCCIG). Cataract surgery and primary intraocular lens implantation in children  2 years old in the United Kingdom and Ireland: findings of national surveys. Br J Ophthalmol, 2009;93(11):1495-8. DOI: 10.1136/bjo.2009.160069

    Podcast

    1. In recognition of the impact on international health care. This paper was selected from publications across the Lancet family of journals for dissemination through a Lancet.com podcast. 

    Awards 

    1. 2019 RCOphth David Owen Ulverscroft Prize for the best research paper (published between January 2016 and 31 December 2018) in paediatric ophthalmology and visual sciences by a UK ophthalmologist. 
    2. 2020 VisionUK Prize for Research on cures and treatments.

    Further Information
    Funders: NIHR (clinical lectureship award AL Solebo), Ulverscroft Foundation (Fellowship, AL Solebo) and Academy of Medical Sciences. 

    Contact: Lola Solebo

    Lifecourse investigations of refractive error

    What have we done?
    We have investigated the complex relationships between myopia and a diverse range of risk factors over the life course. The aim was to identify, where possible, risk factors that can be modified or biological processes and pathways that would merit further research. Our findings have provided information to support advocacy for equitable and appropriate allocation of resources for adults with impaired vision.

    We have completed methodological work to inform a new WHO international taxonomy of myopia. Furthermore, on initiation of the International Myopia Institute (IMI), we proposed a set of standards in defining and classifying myopia for clinical and epidemiologic studies.

    Outputs 
    1. Cumberland PM, Chianca A, Rahi JS, Eyes UB, Vision Consortium. Laser refractive surgery in the UK Biobank study: Frequency, distribution by sociodemographic factors, and general health, happiness, and social participation outcomes. Journal of Cataract & Refractive Surgery. 2015 Nov 1;41(11):2466-75. DOI: 10.1136/bjophthalmol-2017-311557
    2. Cumberland PM, Bao Y, Hysi PG, Foster PJ, Hammond CJ, Rahi JS, Eyes UB, Vision Consortium. Frequency and distribution of refractive error in adult life: Methodology and findings of the UK Biobank study. PloS one. 2015;10(10). DOI: 10.1371/journal.pone.0139780.  
    3. Cumberland PM, Chianca A, Rahi JS. Accuracy and utility of self-report of refractive error. JAMA ophthalmology. 2016 Jul 1;134(7):794-801. DOI: 10.1001/jamaophthalmol.2016.1275
    4. Bountziouka V, Cumberland PM, Rahi JS. Trends in Visual Health Inequalities in Childhood Through Associations of Visual Function With Sex and Social Position Across 3 UK Birth Cohorts. JAMA ophthalmology. 2017 Sep 1;135(9):954-61. DOI: 10.1001/jamaophthalmol.2017.2812
    5. Flitcroft DI, He M, Jonas JB, Jong M, Naidoo K, Ohno-Matsui K, Rahi J, Resnikoff S, Vitale S, Yannuzzi L. IMI–Defining and classifying myopia: a proposed set of standards for clinical and epidemiologic studies. Investigative ophthalmology & visual science. 2019 Feb 28;60(3):M20-30. DOI: 10.1167/iovs.18-25957

    Further information
    This research was carried out by Philippa Cumberland and Vasiliki Bountziouka who were supported by core funding from Ulverscroft Vision Research Group. 

    Contact: Jugnoo Rahi

    Genetic epidemiology
    Outputs
    1. Hysi PG, Choquet H, Khawaja AP, Wojciechowski R, Tedja MS, Yin J, Simcoe MJ, Patasova K, Mahroo OA, Thai KK, Cumberland PM. Meta-analysis of 542,934 subjects of European ancestry identifies new genes and mechanisms predisposing to refractive error and myopia. Nature Genetics. 2020 Mar 30:1-7. DOI: 10.1038/s41588-020-0599-0

     

    Diagnosis and Management

    OCT imaging for the eyes of children with or without uveitis

    Why is this research needed?
    Paediatric uveitis (inflammation inside the eye) is an uncommon disorder which carries the risk of blindness. In the most common form of the disorder, anterior uveitis, the front chamber of the eye is affected. Inadequate treatment of active inflammation has been shown to be related to a poor outcome. Currently, disease activity is assessed using a bio-microscopic examination of the anterior chamber of the eye, undertaken by an ophthalmologist (eye doctor), who grades the degree of inflammation using an internationally agreed scale. This scale has not been validated for use in children, and when used in adults it is open to considerable variability between doctors. We need a better way to quantify (count ‘how much’) and qualify (describe what ‘type’) inflammation inside children’s eyes. 

    What are we going to do?
    A new adaptation of an existing imaging technology, optical coherence tomography, has been shown to be able to detect and measure inflammation inside the eye in animal studies and small pilot studies in adults. Another new adaptation, OCT angiography, can image blood flow within the different tissues in the eye. OCT cameras are in common clinical use to assess inflammation in the back of the eye (choroid and retina). A previous pilot study has demonstrated the feasibility of OCT/A image capture in children. We now aim to validate OCT detection of anterior chamber activity, and OCTA classification of disease type, in children. 

    Paediatric Ocular Inflammation Group (POIG) 

    This study is supported by POIG a multidisciplinary, national group which supports the development of the evidence base necessary to inform management strategies, service commissioning and service delivery for children with ocular inflammatory disorders.

    Study dates 

    July 2019 - May 2024

    Further Information
    Funders: this research is being carried out at GOS ICH UCL with the support of an NIHR Clinician Scientist award to Ameenat Lola Solebo (CS-2018-18-ST2-005) who continues to also work as a Consultant Ophthalmologist at Great Ormond Street Hospital NHS Foundation Trust.

    Contact: Lola Solebo

    Unicorns: Uveitis in childhood national prospective cohort study 

    Why is this research needed?
    Childhood uveitis is a rare inflammatory eye disease. One in every five affected children loses vision in at least one eye before reaching the age of 16, due to structural damage caused by uncontrolled inflammation. The uveitis can continue to be active into mid-adulthood. Currently: 

    • We do not understand the causes of disease;
    • We cannot predict response to our existing therapies; and
    • We cannot predict long term outcomes.

    Newly emerging ‘biological’ therapies have proven themselves to be effective for certain populations of children with uveitis, but:

    • We do not know if children with milder disease truly benefit from these (and other) powerful systemic medications which require frequent blood monitoring, frequent hospital admissions, and carry significant short- and long-term risk of adverse events.

    What are we going to do?
    UNICORNS is a UK multicentre observational study which will recruit children newly diagnosed with uveitis, collect the details of their family, birth and medical history, and watch their disease over time (a ‘longitudinal inception cohort study’). This study will allow us to identify the predictors of outcome, including response to therapy. 

    Paediatric Ocular Inflammation Group (POIG) 

    This study is supported by POIG a multidisciplinary, national group which supports the development of the evidence base necessary to inform management strategies, service commissioning and service delivery for children with ocular inflammatory disorders.

    Study dates

    Starting in the summer of 2020.

    Further Information
    Funders: this research is being carried out at GOS ICH UCL with the support of an NIHR Clinician Scientist award to Ameenat Lola Solebo (CS-2018-18-ST2-005) who continues to also work as a Consultant Ophthalmologist at Great Ormond Street Hospital NHS Foundation Trust.

    Contact: Lola Solebo

    Study of Optimal Perimetric Testing In Children (OPTIC)

    Why is this research needed?
    Assessment of the visual field is a key component of the clinical management of complex eye and brain disorders. Visual field testing (perimetry) requires prolonged concentration, an ability to follow instructions and to co-ordinate a response to test signals. Children often struggle with perimetry and there is a lack of evidence about optimal approaches. 

    What did we do? 
    The core research ended in 2018. OPTIC was a prospective, multi-centre observational study which aimed to:

    • Investigate the feasibility and reliability of perimetry in children without ophthalmic disease.
    • Develop normative data for common perimetric approaches.
    • Develop novel analytical approaches for perimetry data.
    • Develop novel clinical measures to define perimetric test quality
    • Investigate optimal approaches to assessing visual fields in children with glaucoma.
    • Investigate optimal approaches to assessing visual fields in children with neuro-ophthalmic disease.
    • Develop a consensus statement on the use of perimetry in the management of childhood glaucomas.
    OPTIC study group

    Peng Tee Khaw, Bronwen Walters (GOSH), Phillippa Cumberland, Isabelle Russell-Eggitt, Chris Timms (MEH), John Brookes (MEH), Anthony Moore, Maria Papadopoulos (MEH), David Garway-Heath, Ananth Viswanathan (MEH), Alki Liasis (GOSH), David Crabb (City University), Mario Cortina-Borja, Dipesh Patel, and Jugnoo Rahi.

    Outputs

    Peer-reviewed papers

    1. Patel, DE; Cumberland, PM; Walters, BC; Cortina-Borja, M; Rahi, JS on behalf of the OPTIC study group. Study of Optimal Perimetric Testing In Children (OPTIC): Evaluation of kinetic approaches in childhood neuro-ophthalmic disease. British Journal of Ophthalmology. 2019;103(8):1085-91. DOI: 10.1136/bjophthalmol-2018-312591.
    2. Patel, DE; Cumberland, PM; Walters, BC; Russell-Eggitt, I; Brookes, J; Papadopoulos, M; Khaw, PT; Viswanathan, AC; Garway-Heath, DF; Cortina-Borja, M; Rahi, JS on behalf of the OPTIC study group. Comparison of Quality and Output of Different Optimal Perimetric Testing Approaches in Children With Glaucoma. JAMA Ophthalmology. 2018;136(2):155-61. DOI: 10.1001/jamaophthalmol.2017.5898
    3. Patel, DE; Viswanathan, AC; Garway-Heath, DF; Cumberland, PM; Walters, BC; Russell-Eggitt, I; Cortina-Borja, M; Rahi, JS on behalf of the OPTIC study group. Study of Optimal Perimetric Testing In Children (OPTIC): Development and feasibility of the Kinetic Perimetry Reliability Measure (KPRM). British Journal of Ophthalmology. 2017;101:94-96. DOI: 10.1136/bjophthalmol-2016-309402
    4. Patel, DE; Geraci, M; Cortina-Borja M. Modelling normative kinetic perimetry isopters using mixed-effects quantile regression. Journal of Vision. 2016;16(6):7. DOI: 10.1167/16.6.7
    5. Patel, DE; Cumberland, PM; Russell-Eggitt, I; Walters, BC; Cortina-Borja, M; Rahi, JS on behalf of the OPTIC study group. Study of Optimal Perimetric Testing In Children (OPTIC): Normative visual field values in children. Ophthalmology. 2015;122(8):1711-7. DOI: 10.1016/j.ophtha.2015.04.038
    6. Patel, DE; Cumberland, PM; Russell-Eggitt, I; Walters, BC; Rahi, JS on behalf of the OPTIC study group. Study of Optimal Perimetric Testing In Children (OPTIC): Feasibility, reliability and repeatability of perimetry in children. PLoS One. 2015;10(6):e0130895. DOI: 10.1371/journal.pone.0130895 
    7. Patel DE, Cumberland PM, Walters BC, Abbott J, Brookes J, Edmunds B, Khaw PT, Lloyd IC, Papadopoulos M, Sung V, Cortina-Borja M, Rahi JS; OPTIC Study Group. Study of Optimal Perimetric Testing In Children (OPTIC): developing consensus and setting research priorities for perimetry in the management of children with glaucoma. Eye (Lond). 2021 Jun 21. DOI: 10.1038/s41433-021-01584-0. Epub ahead of print.

    Patient/public engagement

    1. Patel, DE on behalf of the OPTIC study group. Visual field testing in children. In Focus magazine article (Moorfields Eye Hospital), Summer 2014 issue.

    Resources

    1. Patel, DE; Cumberland, PM; Russell-Eggitt, I; Walters, BC; Cortina-Borja, M; & Rahi, JS. (2015). OPTIC study normative perimetry templates. [Digital resource]
    2. Patel, DE; Cortina-Borja, M. kineticF: Framework for the Analysis of Kinetic Visual Field Data. R CRAN 2015. [Statistical package]

    Further information
    Funders: Guide Dogs for the Blind Association (Project grant)

    Contact: Jugnoo Rahi 


     

     

    Eyes and Vision and Systemic Disease (Multimorbidity)

    Retinal bioimaging in neurodegenerative and cardiovascular diseases

    Why is this research needed?
    The two most common causes of death in England are dementia and cardiovascular disease. Dementia affects more than 800,000 people in the UK while every three minutes, someone has a heart attack. Given that we are living longer, more people are likely to be affected by these diseases over the next decade and it is therefore important that we develop effective strategies to identify those who are at risk.

    The eye is the only part of the body where we can directly see blood vessels and the nerves. It has been shown that thinning of the nerves at the wallpaper lining the back of the eye, the retina, happens in people whose cognitive function is worsening. Similarly, changes in the blood vessels of the body, such as those that come with high blood pressure or diabetes, are also often visible in the eye. Researchers have found that specific features on retinal photographs can identify who might develop a stroke or heart attack within 5 years.

    The purpose of this project is to study the association between changes in the eye and these two groups of diseases – cardiovascular disease and dementia. Using retinal scans of more than 250,000 people over the age of 40, we will study the retina of people, who go on to develop dementia, stroke and heart attack.

    What are we going to do?
    Statistical techniques will be used to study the relationship between specific changes in the retina and disease. Artificial intelligence has the ability to find patterns of changes, which may not be picked up by humans by studying huge amounts of data. We will use a type of artificial intelligence, called deep learning, to explore whether there are any novel signs in the retina, which are associated with developing heart attacks, stroke and dementia. If we find specific changes in the retina of these groups, we will check their accuracy in another set of retinal scans from the UK Biobank study, where more than 85,000 healthy volunteers have had retinal scans, to make sure that the results can generalise across different populations. 

    Further information
    Siegfried Wagner is funded through a Medical Research Council Clinical Doctoral Research Training Fellowship and will conduct this research whilst continuing to work as an ophthalmologist at Moorfields NHS foundation trust. Additional project funding for AlzEye comes from Fight for Sight UK and Alzheimer’s Research UK. 

    Contact: Siegfried Wagner

    Unicorns: Uveitis in childhood national prospective cohort study 

    Why is this research needed?
    Childhood uveitis is a rare inflammatory eye disease. One in every five affected children loses vision in at least one eye before reaching the age of 16, due to structural damage caused by uncontrolled inflammation. The uveitis can continue to be active into mid-adulthood. Currently: 

    • We do not understand the causes of disease;
    • We cannot predict response to our existing therapies; and
    • We cannot predict long term outcomes.

    Newly emerging ‘biological’ therapies have proven themselves to be effective for certain populations of children with uveitis, but:

    • We do not know if children with milder disease truly benefit from these (and other) powerful systemic medications which require frequent blood monitoring, frequent hospital admissions, and carry significant short- and long-term risk of adverse events.

    What are we going to do?
    UNICORNS is a UK multicentre observational study which will recruit children newly diagnosed with uveitis, collect the details of their family, birth and medical history, and watch their disease over time (a ‘longitudinal inception cohort study’). This study will allow us to identify the predictors of outcome, including response to therapy. 

    Paediatric Ocular Inflammation Group (POIG) 

    This study is supported by POIG a multidisciplinary, national group which supports the development of the evidence base necessary to inform management strategies, service commissioning and service delivery for children with ocular inflammatory disorders.

    Study dates

    Starting in the summer of 2020

    Further Information
    Funders: this research is being carried out at GOS ICH UCL with the support of an NIHR Clinician Scientist award to Ameenat Lola Solebo (CS-2018-18-ST2-005) who continues to also work as a Consultant Ophthalmologist at Great Ormond Street Hospital NHS Foundation Trust.

    Contact: Lola Solebo

    Homonymous Hemianopia

    Homonymous Hemianopia HH Sian Handley Eyes and Vision Research

    Why is this research needed?
    Homonymous Hemianopia (HH) is the absence of half of what you can see due to damage that affects the opposite side of the brain. This is one specific type of cortical visual impairment (CVI) – visual impairment as a result of damage to areas of the brain. CVI is the main cause of childhood visual impairment in the UK. HH has been quite extensively researched in adults including treatments to help with the visual impairment, but comparatively very little is known about it in children.  

    What are we going to do?
    We are going to do a series of eye tests to look at the characteristics of HH in children. Utilising questionnaires, we are going to measure the vision-related quality of life of children with HH and how the HH affects their visual function in life. In a smaller subgroup of children, we are going to give them glasses with two types of prisms on to test if they help them with their visual impairment. The prisms can give up to an extra 30 degrees of vision on the side with the visual field deficit. 

    Patient and Public Involvement 
    The project has been developed in consultation with the parents of children with HH at Great Ormond Street Hospital (GOSH). It has also been presented to members of the public at the GOSH Biomedical Research Centre (BRC) family fun day.  

    What if I do not want my child’s data to be used in this study?
    At any time you can withdraw from the project and your child’s data will not be used. This will have no impact on the clinical care your child receives. 

    Further information
    This project is funded by the National Institute for Health Research (NIHR) Doctoral Fellowship awarded to Siân who is conducting this research at GOS ICH UCL whilst also being part of the clinical team in the Department of ophthalmology at great all the hospital NHS foundation trust.

    Contact: Siân Handley
    Follow @HHICProject

    1946, 1958 and 1970 British birth cohort studies

    Why is this research needed? 
    There is limited information about whether and how vision and eye conditions impact health and social outcomes and about inequalities in visual health during childhood and in adult life.

    Such research is best conducted using large general population-based studies and within the UK there are several cohorts and other longitudinal studies which offer appropriate opportunities including the three national British birth cohort studies (1946, 1958 and 1970 birth cohorts). This is an ongoing programme of research which comprises distinct projects drawing on different cohort studies within CLOSER.

    What have we done?
    We have investigated temporal trends in visual function in childhood, demonstrating declining visual function and increasing inequalities.

    We have completed methodological work to inform a new WHO international taxonomy of myopia.

    Outputs 
    1. Cumberland PM, Bountziouka V, Rahi JS. Impact of varying the definition of myopia on estimates of prevalence and associations with risk factors: time for an approach that serves research, practice and policy. Br J Ophthalmol. 2018;102:1407–1412. DOI: 10.1136/bjophthalmol-2017-311557
    2. Bountziouka V, Cumberland PM, Rahi JS. Trends in Visual Health Inequalities in Childhood Through Associations of Visual Function With Sex and Social Position Across 3 UK Birth Cohorts. JAMA ophthalmology. 2017 Sep 1;135(9):954-61. DOI: 10.1001/jamaophthalmol.2017.2812

    Further information
    Contact: Jugnoo Rahi

    Millennium Cohort Study (MCS)

    What have we done and what are we going to do?
    We have investigated the frequency and associations of eye conditions and the prevalence and risk factors for strabismus. 

    We are now using data collected at different time points during childhood and adolescence, to address the following aims:

    • To evaluate the associations between amblyopia and school readiness and cognitive performance during early schooling.
    • To evaluate the educational trajectories at key stages during primary and secondary schooling by common vision disorders such as amblyopia.
    • To assess the impact of vision impairment on physical activity in childhood and adolescence.
    • To assess the impact of vision impairment on intentions and ambitions for education, career and social outcomes. 
    • To assess the associations between vision and psychological, emotional, and behavioural outcomes in adolescence.
    Outputs
    1. Horvat-Gitsels LA, Corina-Borja M, Rahi JS (2021). The impact of impaired vision on physical activity in childhood and adolescence. Findings from the Millennium Cohort Study. British Journal of Ophthalmology. DOI: 10.1136/bjophthalmol-2021-320315
    2. Gitsels, L. A., Cortina-Borja, M., & Rahi, J. S. (2020). Is amblyopia associated with school readiness and cognitive performance during early schooling? Findings from the Millennium Cohort Study. PLOS ONE, 15 (6), e0234414. DOI: 10.1371/journal.pone.0234414
    3. Cumberland, P. M., Pathai, S., Rahi, J. S., & Millennium Cohort Study Child Health Group. (2010). Prevalence of eye disease in early childhood and associated factors: findings from the millennium cohort study. Ophthalmology, 117 (11), 2184-90. DOI: 10.1016/j.ophtha.2010.03.004
    4. Pathai, S., Cumberland, P. M., & Rahi, J. S. (2010). Prevalence of and early-life influences on childhood strabismus: findings from the Millennium Cohort Study. Arch Pediatr Adolesc Med, 164 (3), 250-257. DOI: 10.1001/archpediatrics.2009.297

    Further information
    This research is supported by core funding for Ulverscroft Vision Research Group.

    Contact: Jugnoo Rahi

    UK Biobank cohort study

    What have we done?
    Major knowledge gaps included the distribution of visual function and the frequency of different levels of sight impairment – from the level that might impact on driving or other activities of daily living up to blindness. In addition, more broadly, the biological, social and lifestyle factors that might influence the development of visual function and the risk of sight impairment as well as the general and mental health, social circumstance and ethnic diversity of adults with impaired sight in the UK today. Furthermore, using short-sightedness (myopia) in particular, as a model of a ‘complex’ eye disease (i.e. influenced by genes and the environment) we have investigated the complex relationships between myopia and a diverse range of risk factors over the life course. The aim was to identify, where possible, risk factors that can be modified or biological processes and pathways that would merit further research. Our findings have provided information to support advocacy for equitable and appropriate allocation of resources for adults with impaired vision. Importantly this project has also extended methods developed in prior cohort study research related to the epidemiological and statistical approaches to studying complex ocular disorders, notably in the use of self-report of vision and eyesight in a research context, which ultimately will benefit ophthalmic epidemiology more generally. 

    Outputs
    1. Khawaja AP, Chua S, Hysi PG, Georgoulas S, Currant H, Fitzgerald TW, Birney E, Ko F, Yang Q, Reisman C, Garway-Heath DF. Comparison of Associations with Different Macular Inner Retinal Thickness Parameters in a Large Cohort: The UK Biobank. Ophthalmology. 2020 Jan 1;127(1):62-71. DOI: 10.1016/j.ophtha.2019.08.015
    2. Pozarickij A, Williams C, Hysi PG, Guggenheim JA. Quantile regression analysis reveals widespread evidence for gene-environment or gene-gene interactions in myopia development. Communications biology. 2019 May 6;2(1):1-8. DOI: 10.1038/s42003-019-0387-5
    3. Cumberland PM, Rahi JS. Visual function, social position, and health and life chances: the UK biobank study. JAMA ophthalmology. 2016 Sep 1;134(9):959-66. DOI: 10.1001/jamaophthalmol.2016.1778
    4. Cumberland PM, Bao Y, Hysi PG, Foster PJ, Hammond CJ, Rahi JS, Eyes UB, Vision Consortium. Frequency and distribution of refractive error in adult life: Methodology and findings of the UK Biobank study. PloS one. 2015;10(10). DOI: 10.1371/journal.pone.0139780.  
    5. Cumberland PM, Chianca A, Rahi JS. Accuracy and utility of self-report of refractive error. JAMA ophthalmology. 2016 Jul 1;134(7):794-801. DOI: 10.1001/jamaophthalmol.2016.1275
    6. Cumberland PM, Chianca A, Rahi JS, Eyes UB, Vision Consortium. Laser refractive surgery in the UK Biobank study: Frequency, distribution by sociodemographic factors, and general health, happiness, and social participation outcomes. Journal of Cataract & Refractive Surgery. 2015 Nov 1;41(11):2466-75. DOI: 10.1016/j.jcrs.2015.05.040

    Further information
    Contact: Jugnoo Rahi


     

    Visual Function and Eye Conditions in Population Studies

    Set of standards for defining myopia

    What have we done?
    We have completed methodological work to inform a new WHO international taxonomy of myopia. Furthermore, on initiation of the International Myopia Institute (IMI), we proposed a set of standards in defining and classifying myopia for clinical and epidemiologic studies.

    Outputs 
    1. Cumberland PM, Chianca A, Rahi JS, Eyes UB, Vision Consortium. Laser refractive surgery in the UK Biobank study: Frequency, distribution by sociodemographic factors, and general health, happiness, and social participation outcomes. Journal of Cataract & Refractive Surgery. 2015 Nov 1;41(11):2466-75. DOI: 10.1136/bjophthalmol-2017-311557
    2. Cumberland PM, Bao Y, Hysi PG, Foster PJ, Hammond CJ, Rahi JS, Eyes UB, Vision Consortium. Frequency and distribution of refractive error in adult life: Methodology and findings of the UK Biobank study. PloS one. 2015;10(10). DOI: 10.1371/journal.pone.0139780.  
    3. Cumberland PM, Chianca A, Rahi JS. Accuracy and utility of self-report of refractive error. JAMA ophthalmology. 2016 Jul 1;134(7):794-801. DOI: 10.1001/jamaophthalmol.2016.1275
    4. Bountziouka V, Cumberland PM, Rahi JS. Trends in Visual Health Inequalities in Childhood Through Associations of Visual Function With Sex and Social Position Across 3 UK Birth Cohorts. JAMA ophthalmology. 2017 Sep 1;135(9):954-61. DOI: 10.1001/jamaophthalmol.2017.2812
    5. Flitcroft DI, He M, Jonas JB, Jong M, Naidoo K, Ohno-Matsui K, Rahi J, Resnikoff S, Vitale S, Yannuzzi L. IMI–Defining and classifying myopia: a proposed set of standards for clinical and epidemiologic studies. Investigative ophthalmology & visual science. 2019 Feb 28;60(3):M20-30. DOI: 10.1167/iovs.18-25957

    Further information
    This research was carried out by Philippa Cumberland and Vasiliki Bountziouka who were supported by core funding from Ulverscroft Vision Research Group. 

    Contact: Jugnoo Rahi

    1946, 1958 and 1970 British birth cohort studies

    Why is this research needed? 
    There is limited information about whether and how vision and eye conditions impact health and social outcomes and about inequalities in visual health during childhood and in adult life.

    Such research is best conducted using large general population-based studies and within the UK there are several cohorts and other longitudinal studies which offer appropriate opportunities including the three national British birth cohort studies (1946, 1958 and 1970 birth cohorts). This is an ongoing programme of research which comprises distinct projects drawing on different cohort studies within CLOSER.

    What have we done?
    We have investigated temporal trends in visual function in childhood, demonstrating declining visual function and increasing inequalities.

    We have completed methodological work to inform a new WHO international taxonomy of myopia.

    Outputs 
    1. Cumberland PM, Bountziouka V, Rahi JS. Impact of varying the definition of myopia on estimates of prevalence and associations with risk factors: time for an approach that serves research, practice and policy. Br J Ophthalmol. 2018;102:1407–1412. DOI: 10.1136/bjophthalmol-2017-311557
    2. Bountziouka V, Cumberland PM, Rahi JS. Trends in Visual Health Inequalities in Childhood Through Associations of Visual Function With Sex and Social Position Across 3 UK Birth Cohorts. JAMA ophthalmology. 2017 Sep 1;135(9):954-61. DOI: 10.1001/jamaophthalmol.2017.2812

    Further information
    Contact: Jugnoo Rahi

    Millennium Cohort Study (MCS)

    What have we done and what are we going to do?
    We have investigated the frequency and associations of eye conditions and the prevalence and risk factors for strabismus. 

    We are now using data collected at different time points during childhood and adolescence, to address the following aims:

    • To evaluate the associations between amblyopia and school readiness and cognitive performance during early schooling.
    • To evaluate the educational trajectories at key stages during primary and secondary schooling by common vision disorders such as amblyopia.
    • To assess the impact of vision impairment on physical activity in childhood and adolescence.
    • To assess the impact of vision impairment on intentions and ambitions for education, career and social outcomes. 
    • To assess the associations between vision and psychological, emotional, and behavioural outcomes in adolescence.
    Outputs
    1. Horvat-Gitsels LA, Corina-Borja M, Rahi JS (2021). The impact of impaired vision on physical activity in childhood and adolescence. Findings from the Millennium Cohort Study. British Journal of Ophthalmology. DOI: 10.1136/bjophthalmol-2021-320315
    2. Gitsels, L. A., Cortina-Borja, M., & Rahi, J. S. (2020). Is amblyopia associated with school readiness and cognitive performance during early schooling? Findings from the Millennium Cohort Study. PLOS ONE, 15 (6), e0234414. DOI: 10.1371/journal.pone.0234414
    3. Cumberland, P. M., Pathai, S., Rahi, J. S., & Millennium Cohort Study Child Health Group. (2010). Prevalence of eye disease in early childhood and associated factors: findings from the millennium cohort study. Ophthalmology, 117 (11), 2184-90. DOI: 10.1016/j.ophtha.2010.03.004
    4. Pathai, S., Cumberland, P. M., & Rahi, J. S. (2010). Prevalence of and early-life influences on childhood strabismus: findings from the Millennium Cohort Study. Arch Pediatr Adolesc Med, 164 (3), 250-257. DOI: 10.1001/archpediatrics.2009.297

    Further information
    This research is supported by core funding for Ulverscroft Vision Research Group.

    Contact: Jugnoo Rahi

    UK Biobank cohort study

    What have we done?
    Major knowledge gaps included the distribution of visual function and the frequency of different levels of sight impairment – from the level that might impact on driving or other activities of daily living up to blindness. In addition, more broadly, the biological, social and lifestyle factors that might influence the development of visual function and the risk of sight impairment as well as the general and mental health, social circumstance and ethnic diversity of adults with impaired sight in the UK today. Furthermore, using short-sightedness (myopia) in particular, as a model of a ‘complex’ eye disease (i.e. influenced by genes and the environment) we have investigated the complex relationships between myopia and a diverse range of risk factors over the life course. The aim was to identify, where possible, risk factors that can be modified or biological processes and pathways that would merit further research. Our findings have provided information to support advocacy for equitable and appropriate allocation of resources for adults with impaired vision. Importantly this project has also extended methods developed in prior cohort study research related to the epidemiological and statistical approaches to studying complex ocular disorders, notably in the use of self-report of vision and eyesight in a research context, which ultimately will benefit ophthalmic epidemiology more generally. 

    Outputs
    1. Khawaja AP, Chua S, Hysi PG, Georgoulas S, Currant H, Fitzgerald TW, Birney E, Ko F, Yang Q, Reisman C, Garway-Heath DF. Comparison of Associations with Different Macular Inner Retinal Thickness Parameters in a Large Cohort: The UK Biobank. Ophthalmology. 2020 Jan 1;127(1):62-71. DOI: 10.1016/j.ophtha.2019.08.015
    2. Pozarickij A, Williams C, Hysi PG, Guggenheim JA. Quantile regression analysis reveals widespread evidence for gene-environment or gene-gene interactions in myopia development. Communications biology. 2019 May 6;2(1):1-8. DOI: 10.1038/s42003-019-0387-5
    3. Cumberland PM, Rahi JS. Visual function, social position, and health and life chances: the UK biobank study. JAMA ophthalmology. 2016 Sep 1;134(9):959-66. DOI: 10.1001/jamaophthalmol.2016.1778
    4. Cumberland PM, Bao Y, Hysi PG, Foster PJ, Hammond CJ, Rahi JS, Eyes UB, Vision Consortium. Frequency and distribution of refractive error in adult life: Methodology and findings of the UK Biobank study. PloS one. 2015;10(10). DOI: 10.1371/journal.pone.0139780.  
    5. Cumberland PM, Chianca A, Rahi JS. Accuracy and utility of self-report of refractive error. JAMA ophthalmology. 2016 Jul 1;134(7):794-801. DOI: 10.1001/jamaophthalmol.2016.1275
    6. Cumberland PM, Chianca A, Rahi JS, Eyes UB, Vision Consortium. Laser refractive surgery in the UK Biobank study: Frequency, distribution by sociodemographic factors, and general health, happiness, and social participation outcomes. Journal of Cataract & Refractive Surgery. 2015 Nov 1;41(11):2466-75. DOI: 10.1016/j.jcrs.2015.05.040

    Further information
    Contact: Jugnoo Rahi


     

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