Sight loss and vision

About this PSP

This PSP was led by a Steering Group headed by representatives from Fight for Sight, the College of Optometrists, Vision UK, and the NIHR Biomedical Research Centre at Moorfields Eye Hospital. It also included representatives of patient/service user groups and healthcare professionals from ophthalmology, optometry, orthoptics, ophthalmic nursing and social care.

2,220 people responded to the survey, generating 4,461 questions. With questions across different eye diseases and conditions, it was decided that 12 final priority setting workshops would take place during April and May 2013. 17% of survey respondents identified themselves as healthcare professionals and over 60% of the respondents were people with sight loss or an eye condition.

See news from this PSP: September 2016, May 2016, September 2015.

The Sight Loss and Vision PSP Top 10s were published in May 2013.

Karen Bonstein, a Manager at the NIHR Biomedical Research Centre at Moorfields Eye Hospital said:

“ Our experience of being involved in a JLA PSP has been transformational.  Having access to an impartial, professionally facilitated process with national reach that encourages open submissions from patient-support charities, members of the public, professional bodies, and healthcare professionals proved to be a multi-faceted journey.   The end result provides a practical set of research priorities agreed by all parties that can be referenced for project and funding development purposes but the process itself delivers so much more: generating interesting debate with unexpected outcomes; seeding long-lasting allegiances between the public, healthcare professionals, charitable and professional bodies; promoting enhanced understanding across a whole sector about public concerns, research opportunities and challenges.  A great deal of work and commitment are required but worth every minute! ”

SLV-PSP-Final-Report-v111.pdf

Sight-Loss-and-Vision-PSP-survey-form.pdf

AMD-spreadsheet-of-uncertaintes.pdf

Cataract-spreadsheet-of-uncertainties.pdf

Childhood-onset-disorders-spreadsheet-of-uncertainties.pdf

Age-Related Macular Degeration (AMD) Top 10

  1. Can a treatment to stop dry AMD progressing and/or developing into the wet form be devised?
  2. What is the cause of AMD?
  3. How can AMD be prevented?
  4. Are there ways of restoring sight loss for people with AMD?
  5. Can the development of AMD be predicted?
  6. What is the most effective way to detect and monitor the progression of early AMD?
  7. What factors influence the progression of AMD?
  8. Can a non-invasive therapy be developed for wet AMD?
  9. Can dietary factors, nutritional supplements, complementary therapies or lifestyle changes prevent or slow the progression of AMD?
  10. What are the best enablement strategies for people with AMD?

The following questions were also discussed and put in order of priority at the workshop:

  1. What is the prospect of developing a screening programme for early detection of AMD?
  2. How effective and safe are current treatments for wet AMD?
  3. Does cataract surgery influence the development/progression of AMD?
  4. How can anti-VEGF treatments e.g. Lucentis be tailored to specific genetic markers predictive for the development of wet AMD?
  5. Is AMD affected by statins?
  6. What is the effectiveness of combining intravitreal steroids with anti-VEGF compared to ani-VEGF treatment alone for patients with wet AMD?
  7. Can donor eyes, or their components, ever be used to restore vision for people with AMD?
  8. What is the best way to assess responses to anti-VEGF treatments for people with wet AMD?
  9. What causes Charles Bonnet syndrome?

Document downloads

For full details of all of the questions identified, please see the document below.

AMD-spreadsheet-of-uncertaintes.pdf

Cataract Top 10

  1. How can cataracts be prevented from developing?
  2. Can the return of cloudy or blurred vision after cataract surgery known as posterior capsule opacity (PCO) or secondary cataract be prevented?
  3. How can cataract progression be slowed down?
  4. What alternatives to treat cataracts other than cataract surgery are being developed?
  5. What is the cause of cataract?
  6. How can cataract surgery outcomes be improved?
  7. How safe and effective is laser assisted cataract surgery?
  8. Should accommodative lenses be developed for cataract surgery?
  9. What is the best measure of visual disability due to cataract?
  10. Can retinal detachment be prevented after cataract surgery?
  11. What are the outcomes for cataract surgery among people with different levels of cognitive impairment (whatever the cause but including dementia, stroke, neurological conditions, head injuries)?

The following questions were also discussed and put in order of priority at the workshop:

  1. Can cataract surgery contribute to macular degeneration?
  2. What level of pain/discomfort does the patient feel during topical anaesthetic compared to local-sub-Tenon's anaesthetic?
  3. If a person has cataracts in both eyes should they be operated on at the same time?
  4. When should cataract surgery take place?
  5. Why does a vitrectomy so often lead to cataract formation?
  6. What is the most effective way of dealing with a rupture of the lens capsule during surgery?
  7. Is cataract surgery beneficial in cases where there is marked photosensitivity?
  8. To what extent can cataract development be predicted?
  9. Is there a link between cataract and cerebral palsy?

Document downloads

For full details of all of the questions identified, please see the document below.

Cataract-spreadsheet-of-uncertainties.pdf

Childhood Onset Disorders Top 10

  1. How can cerebral visual impairment be identified, prevented and treated in children?
  2. How can treatment for visual pathway damage associated with pre-term birth be developed?
  3. How do we improve screening and surveillance from the ante-natal period through to childhood to ensure early diagnosis of impaired vision and eye conditions?
  4. Can the treatment of amblyopia be improved to produce better short and long term outcomes than are possible with current treatments?
  5. How can cataract be prevented in children?
  6. What are the causes of coloboma and microphthalmia/anophthalmia and how can they be prevented?
  7. Can vision be corrected in later life for people with amblyopia?
  8. How can retinoblastoma be identified, prevented and treated in children?
  9. Can better treatments for glaucoma in children be developed?
  10. Can a treatment be developed to improve vision for people with albinism?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. Is it possible to develop a way of permanently treating coloboma?
  2. What is the most effective way to assess when amblyopia treatment must be stopped to prevent children from developing adverse conditions such as intractable double vision?
  3. Is it possible to identify what children with a visual impairment due to coloboma actually see?
  4. Is the Sbisa bar result a reliable way to determine a person's risk of developing intractable double vision during patching?
  5. What is the life long prognosis for very premature babies with reduced quality of vision as measured using contrast sensitivity tests?

Document downloads

For full details of all of the questions identified, please see the document below.

Childhood-onset-disorders-spreadsheet-of-uncertainties.pdf

Corneal and External Eye Conditions Top 10

  1. Can new therapies such as gene or stem cell treatments be developed for corneal diseases?
  2. What is the most effective management for dry eye and can new strategies be developed?
  3. Can treatments to save eye sight from microbial keratitis be improved?
  4. How can the rejection of corneal transplants be prevented?
  5. Can the outcomes of corneal transplantation be improved?
  6. What causes keratoconus to progress and can progression be prevented?
  7. Can non-surgical therapy be developed for Fuchs' corneal dystrophy?
  8. Can corneal infections be prevented in high-risk individuals such as contact lens wearers?
  9. What is the cause of keratoconus and can it be prevented?
  10. What is the most effective management of ocular complications associated with Stevens Johnson Syndrome?
  11. Can severe ocular surface disease in children, such as blepharokeratoconjunctivitis and vernal keratoconjunctivitis be managed better?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. Can artificial corneas to treat corneal disease be developed?
  2. Can more comfortable lenses for keratoconus correction be created to allow longer wear times?
  3. Can a non-surgical cure for keratoconus be developed?
  4. What causes dry eye?
  5. Is early detection beneficial for cross-linking treatment to prevent progression of keratoconus?
  6. What is the effectiveness of Omega 3 fatty acids, zinc and other products in relieving symptoms of dry eye?
  7. How is the progress of keratoconus best quantified?
  8. Should children with no symptoms but who have a parent with keratoconus be tested for the condition?
  9. Can ways be detected to detect the early signs of keratoconus?

Glaucoma Top 10

  1. What are the most effective treatments for glaucoma and how can treatments be improved?
  2. How can loss of vision be restored for people with glaucoma?
  3. How can glaucoma be stopped from progressing?
  4. What can be done to improve early diagnosis of sight-threatening glaucoma?
  5. What causes glaucoma?
  6. What is the most effective way of monitoring the progression of glaucoma?
  7. How can glaucoma patients with a higher risk to progress rapidly be detected?
  8. Why is glaucoma more aggressive in people of certain ethnic groups, such as those of West African origin?
  9. How can glaucoma be prevented?
  10. Is there a link between treatment adherence and glaucoma progression and how can adherence be improved?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. How can a structural test based on nerve condition that would be a good predictor of visual field loss be developed?
  2. Can reliable methods of self monitoring eye pressure be developed and improve outcomes?
  3. How can damage to the nerve structure of the eye be prevented before glaucoma is diagnosed?
  4. Can any dietary measures, dietary supplements, lifestyle changes or complementary therapies slow the progression of glaucoma?
  5. How can the optic nerve be protected from damage due to fluctuations in eye pressure that may not be detected in the clinic?
  6. What effect does cataract surgery have on glaucoma?

Inherited Retinal Disease

  1. Can a treatment to slow down progression or reverse sight loss in inherited retinal diseases be developed?
  2. How can sight loss be prevented in an individual with inherited retinal disease?
  3. Is a genetic (molecular) diagnosis possible for all inherited retinal diseases?
  4. What factors affect the progression of sight loss in inherited retinal diseases?
  5. What causes sight loss in inherited retinal diseases?
  6. What is the most effective way to support patients with inherited retinal disease?
  7. Can the diagnosis of inherited retinal diseases be refined so that individuals can be given a clearer idea about their specific condition and how it is likely to progress?
  8. What is the relationship between sight loss and mental health for people with inherited retinal diseases?
  9. Would having a treatment for an inherited retinal disease preclude a patient from having another treatment?
  10. With regard to inherited retinal disease what is the role of pre-natal and pre-implantation diagnosis in helping parents make informed choices?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. Can the genetic defects be corrected in utero to prevent inherited retinal diseases?
  2. Can eye transplants be developed for people with inherited retinal diseases?

Neuro-ophthalmology Top 10

  1. What is the underlying cause of optic nerve damage in optic neuropathies, such as anterior ischaemic optic neuropathy, Leber's hereditary optic neuropathy, optic neuritis and other optic neuropathies?
  2. What are the most effective treatments and rehabilitation for optic neuropathies, e.g. Leber's hereditary optic neuropathy and anterior ischaemic optic neuropathy?
  3. Can vision loss due to optic nerve diseases such as giant cell arteritis, Leber's hereditary optic neuropathy, optic neuritis and optic atrophy, be restored, for example through gene therapy and stem cell treatment?
  4. What rehabilitation or treatment methods are most effective for vision loss following brain damage due to stroke, brain injury, cerebral vision impairment, tumours and dementias?
  5. What is the most effective way to assess vision in patients with neurological visual impairment i.e. stroke, dementia and cerebral/cortical visual impairment?
  6. Can the early stages of optic neuropathy be detected?
  7. How can optic neuropathies be prevented, for example anterior ischaemic optic neuropathy, Leber's hereditary optic neuropathy, optic neuritis and other optic neuropathies?
  8. Can treatments be developed for visual field and ocular motility manifestations following stroke?
  9. How can electronic devices improve or restore vision for people with optic neuropathies?
  10. Can an alternative or new treatment be developed that will treat the sight loss caused by giant cell arteritis?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. What causes vision loss in patients with dementia?
  2. What is the relationship between visual impairment and dementia?
  3. How can cerebral vision impairment in children be prevented?
  4. Is there a relationship between acute onset ocular cranial nerve palsies due to underlying vascular disease and increasing levels of obesity and poor lifestyle for younger patients?

Ocular Cancer Top 10

  1. What can be done to help ocular cancer sufferers?
  2. Can gene-based targeted therapies for ocular cancers be developed?
  3. How can immunotherapy be used to fight metastatic ocular melanoma?
  4. What are the most effective detection and screening methods for follow-up to detect metastasis of ocular melanoma?
  5. How can follow-up for ocular complications be managed in patients with ocular melanoma?
  6. What is the best management of metastatic choroidal melanoma?
  7. What activates choroidal melanoma metastasis in the liver after the primary melanoma has been treated?
  8. Can adjuvant therapies be developed to treat ocular melanoma?
  9. What are the causes of ocular cancer and how can they be prevented?
  10. What is the most effective treatment for primary ocular melanoma?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. What progress has been made in radiation of malignant ocular melanoma?
  2. What is the best way to monitor and ensure early diagnosis of subsequent tumours in people with the heritable form of retinoblastoma?
  3. Is there any particular diet that could be beneficial to prevent further cancers following ocular melanoma?

Ocular Inflammatory Disease Top 10

  1. What are the most effective treatments for ocular and orbital inflammatory diseases?
  2. What causes thyroid eye disease?
  3. Can the severity of ocular and orbital inflammatory disease in an individual be predicted?
  4. Is it possible to prevent further occurrences of retinal damage caused by toxoplasmosis?
  5. What causes birdshot retinopathy?
  6. Why does disease burn out in patients with ocular and orbital inflammatory diseases?
  7. Can early detection methods be developed for ocular and orbital inflammatory diseases?
  8. What medications best prevent the development of eye disease in Behcets?
  9. What causes scleritis?
  10. Can diet or lifestyle changes prevent uveitis from developing?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. How often should tests be run for ongoing chronic uveitis and is current monitoring safe?
  2. Could biomarkers be used to track disease progression in thyroid eye disease?

Refractive Error and Ocular Motility Top 10

  1. What factors influence the development of refractive error (myopia, astigmatism, presbyopia, and long-sightedness)?
  2. What is the cause of both congenital and acquired nystagmus?
  3. How can the development of binocular vision in young children with squint and amblyopia be promoted, and would the same approach work in older individuals without inducing intractable diplopia?
  4. Would correction of refractive error have a positive impact on early life learning and development?
  5. Does early diagnosis of refractive error improve long-term prognosis and promote faster, more effective treatment?
  6. What is the effect of congenital nystagmus on visual and emotional development?
  7. What is the most effective treatment for exotropia and when should it be delivered?
  8. How can the functional effects of surgical treatment for squint be best assessed?
  9. Could the accurate testing of refractive error be made less dependent on a subjective response, i.e. the person's own response?
  10. How can myopia be prevented?

The following questions were also discussed and ranked in order of priority at the workshop:

  1. How can people with visual distortion accurately be assessed?
  2. How can more effective treatments for both congenital and acquired nystagmus be developed?
  3. What is the relationship between progressive myopia and glaucoma?
  4. What is the impact of delaying squint surgery until after treatment of amblyopia?
  5. What is the relationship between progressive myopia and retinal detachment?
  6. What is the most effective way to detect nystagmus in all age groups?

Retinal Vascular Disease Top 10

  1. What are the best methods to prevent retinopathy of prematurity?
  2. How can sight loss from diabetic retinal changes be prevented and reduced?
  3. What are the predictive factors for the progression to sight threatening diabetic eye disease?
  4. Is there a way to improve screening of premature babies for retinopathy of prematurity?
  5. Can an effective long lasting treatment for diabetic macular oedema, both ischaemic and non-ischaemic, be developed?
  6. Can a retinal vein occlusion be predicted and prevented?
  7. Can new non-invasive treatments be developed to slow down the progression of diabetic retinopathy?
  8. What are the barriers that prevent diabetic patients having regular eye checks?
  9. What rehabilitation programmes are best for the management of distorted vision from retinal diseases?
  10. What is the efficacy and safety of anti-VEGF agents in the treatment of retinopathy of prematurity?

Vitreoretinal or Ocular Trauma Top 10

  1. How can surgical techniques be improved to save sight for eyes damaged by injury?
  2. How can the risk of losing sight for people with retinal detachment be reduced?
  3. How can better interventions be developed that are effective in treating vitreous opacities/eye floaters?
  4. What causes retinal detachment and can it be prevented?
  5. Can more effective diagnostic tools be developed for assessing the vitreous and eye floaters?
  6. Can a functioning prosthetic eye be developed to replace an eye damaged by injury?
  7. How can epiretinal membrane/fibrosis be prevented or treated?
  8. Can stem cells be used to regrow an eye or part of an eye?
  9. What causes posterior vitreous detachment/vitreous syneresis?
  10. Are there methods to prevent and improve the treatment of macular holes?

The following questions were also discussed and put in order of priority at the workshop:

  1. How can vitreous detachment be prevented?
  2. What causes vitreous opacities/eye floaters?
  3. Can vision be restored for people whose retina was detached many years ago?
  4. Can an optic nerve damaged by injury be regenerated?
  5. How can vitreous opacities/eye floaters be prevented?
  6. What is the relationship (eg. prevalence, time-frame, causal factors) between vitreous syneresis, posterior vitreous detachment and retinal detachment?
  7. How can the vitreous be repaired or regenerated?
  8. What is the likelihood of a macular hole developing in the second eye once it is diagnosed in the first eye?
  9. What is the most effective detection method for alerting to the development of macular hole?
  10. What causes retinal detachment after cataract surgery?