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Implementing ROP screening 2: Decision-making and follow up

ROP screening findings must be clearly recorded and instructions on what needs to be done clearly indicated to neonatologist, team and parents.
Screening for ROP needs to be effective, efficient and safe for the baby. To achieve this, the screening team must follow a number of key steps at each stage of the process. In this video we consider stages three and four. In a previous video, we considered stages one and two. Stage three of the screening process is the management decision. The ophthalmologist takes responsibility for making the management decision based on the screening outcome, that is to rescreen at a later date, treat or discharge .They must clearly communicate the decision to both the neonatal team and the parents.
It’s very important that the signs that you have elicited are documented in the medical records for each eye separately, so you need to to put the date and then right eye, and put down your findings whether the vessels are mature or immature and there’s no ROP. If there is ROP present, you need to write down the most severe stage. So if there is a lot of stage one with some stage two, then that eye is classified as stage two. If there is pre plus disease then you document that. And then for the left eye you do exactly the same. Whether the vessels are mature or immature, if retinopathy of prematurity is present, the stage and the zone.
And then the last and most important thing to document is the action or your management decision. So to make the management decision you take the findings from the eye with the most advanced disease. ROP is usually symmetrical between eyes, so this is usually not a problem, but sometimes one eye has more ROP than the other , so work out which eye has got the most advanced ROP and base your decision on what you find there. So the management decision is that no further screening is needed and this is because the retinal blood vessels are either mature and have reached the ora serrata or retinopathy of prematurity was present at previous visits and it’s now definitely getting better without treatment.
So that is the indication for discontinuing screening. The second management decision is that urgent treatment is required and the third management decision is that you need to see the baby again. Stage four of the screening process happens after screening to ensure continuity of care the screening team records in detail the findings and decisions made and ensures that the parents are fully informed and supported. The findings of screening must be documented in the medical records and also you need to have a second way of recording the findings. This can either be a separate paper record for each baby, some people use a register.
This allows individual babies to be tracked to see whether the disease is getting worse or getting better and also whether they failed to attend for a follow-up visit. Increasingly electronic systems are being used to record findings and this could also be used as a way of monitoring individual babies over time and to pull data to track whether rates of ROP are changing over time. A very important thing to consider is, if parents refuse treatment, or if the baby is too sick to be screened on the day when they should have been this must be documented in the medical records for medical legal reasons.
So let’s say a baby was too sick, then the date needs to be, in the date in the medical records, needs to be written ROP screening not undertaken because baby too sick screening rescheduled and then give the date and sign it. If the parents refuse, again put the date and then put parents refused for their baby to be examined and ideally that should be signed by two people and the parents also. Then you’ve got cast iron evidence that you did the right thing to recommend screening, but it was the patient, the parents decision, that they didn’t want their child to be examined.
Communication with a neonatal team is particularly important if the baby needs treatment because all the arrangements have to be made quickly because the baby must be treated within 48 hours or at the latest 72 hours. If babies have got aggressive posterior ROP, then 24 to 48 hours is really the time limit for treatment to occur and so a lot of arrangements have to be made someone has to be available, equipment for monitoring the babies, sedation analgesia, the laser - is it working, and so on. There are a couple of things you need to do before you leave the unit.
First of all you need to make sure that all the babies listed for examination have been examined or those who are too sick or whether parents refused that has been documented in the medical records. If there are babies who are on the list who have not been examined you need to find out whether these are babies who’ve been discharged or whether there are babies on the unit and somehow they’ve not been taken into account. If the babies have been discharged and they’ve not come back for screening it’s very important that someone is responsible for following these babies up.
Nowadays most parents have a mobile phone and so someone should be dedicated, and it’s either their allocated job to contact the parents, to explain the importance of them bringing their baby back for a further examination. It’s also important to confirm with the neonatal team that you or a colleague will be returning to the neonatal unit the following week and the same day and the same time. If for any reason this needs to change, then everybody needs to know so that the nurse dilating the pupils, dilates them at the right day, in the right time and parents of discharged babies know when to bring their babies back.
It’s very important to be aware that many of the babies who go blind, go blind because of failure of screening and so systems need to be put in place to make sure that all babies who should be screened are screened on time and that they continue screening until it’s no longer required. Screening for retinopathy of prematurity needs to be effective efficient and safe for the baby. And it’s quite useful to think about four c’s in relation to those different criteria.
The first is coverage - it’s very important that is a very high proportion of the babies who should be examined, are examined at every session because one of the important reasons why babies become blind from ROP ROP is because they slipped through the net and were not screened when they should have been. Comfort and safety are also very important and this entails swaddling the baby, maybe giving them sucrose, and safety means that there is a nurse present, always, with a pulse oximeter, particularly for unstable babies so that if they do become unstable during screening, the nurse is alerted to that and takes necessary action. Another C is the clinical findings which need to be elicited, interpreted, documented and acted on.
And then communication - this is absolutely key and this requires verbal communication with the neonatal team members and with their parents importantly, as well as documentation in medical records and in individual data recording sheets or whatever system you are using or in a database .
In summary: Once each ROP examination is completed it is important to record all the details A management decision is made based on the stage of disease There must be clear communication on treatment with the neonatal team and parents, verbally and in writing

In this second video on the four stages of the screening process for retinopathy of prematurity (ROP), Professor Clare Gilbert explains the procedures involved in completing a screening after the eye examination.

Acting on screening decisions

Once screening has been completed, it is important that the findings are clearly recorded and instructions on what needs to be done are clearly indicated for the neonatologist, nurse and parents.

  • If the decision is to treat then the team must be prepared to set up the treatment within 24 to 48 hours.

  • If the decision is to discharge then the final findings must be clearly documented and explained to the parents.

  • If the decision is to rescreen, the challenge for the neonatal team is to ensure these babies are seen at the right time.

Questions for reflection

Consider what information needs to be given to parents and the details to be recorded for each baby after ROP screening. How is this managed in your setting? For example, what written information is given to parents before screening? In some settings, a neonatal nurse is assigned as an ROP nurse and will keep a ROP diary to list which babies should be screened on a specific day. How are eligible babies identified in your setting, and is this information compiled in a way that is easy to use? Where are the findings of each screening documented, and does this include all the necessary information?

In your experience, what is the best method to inform parents understanding of what is being done for their baby and what is expected from them in the long run?

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Retinopathy of Prematurity: Practical Approaches to Prevent Blindness

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