Retinal degenerations are now regarded as “actionable diseases” meaning that action can be taken to make a difference in these conditions. However, identifying what intervention is suitable for you may depend on knowing your genetic mutation but also at what stage of disease you are in.
This is known as the window of opportunity for therapeutic intervention. For example if you know the genetic cause of disease and retinal imaging tests have shown intact photoreceptor cells, gene replacement therapy may be appropriate.
With progressive photoreceptor cell degeneration, pharmacotherapy neuroprotective strategies may serve to slow or halt disease. In the later stages of disease where there is a complete loss of photoreceptor cells, optogenetics, retinal implants or cell replacement strategies may be more appropriate.
Clinical care as we know it is evolving for everyone diagnosed with a sight loss condition. The medical community now realise that an individual’s own evaluation of their condition is as important as any eye assessment they may receive during a clinic visit.
Even if visual field assessments don’t reveal a change in a condition, a person may feel there has been a change in some way.
Their own reflections and experience of the condition, known as “Patient Reported Outcome Measures (PROMS)” are now regarded to be extremely important in evaluating an outcome for a patient.
The inclusion of such outcome measures in a doctor’s clinical evaluation will take time, as the medical field needs to find a way of grouping and weighting a person’s opinions and comments before incorporating them meaningfully into an overall clinical assessment or even clinical trial design. It is very important to remember that very subtle changes which cannot be measured may make a big difference to a person’s quality of life.
Capturing this information will provide the best means of evaluating a person’s condition and in time, will also provide valuable information when diagnosing sight loss conditions.
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