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Who should be involved in an ROP service?

ROP services need to be coordinated nationally and across the multidisciplinary teams within hospitals which provide neonatal care.
A successful retinopathy of prematurity programme ensures that preterm babies are provided with high-quality care to prevent ROP; babies at risk of ROP are identified and screened at appropriate times; babies who need ROP treatment receive it in a timely manner; and babies who have had ROP treatment are also provided with follow-up services after discharge. To establish and manage a seamless ROP service requires close collaboration and leadership from the neonatology and ophthalmology teams. At the hospital level, the ROP programme needs a strong and visible leadership team. The team should include an ophthalmologist, neonatologist, and neonatology nurse.
The leadership team advocates for the ROP programme to hospital management and within their respective departments to colleagues. This may involve reviewing the quality of current ROP care or undertaking a baseline survey of the need for ROP services. In the initial stages, the leadership team may need to present evidence, survey findings, proposals, and plans to key people to explain what is needed locally.
Advocacy is an important step to gain the support of everyone involved at the hospital and obtain investment and resources which are needed to make the ROP programme a success. The next step is for the leadership team to identify the key personnel needed so that the ROP team can run a successful programme. This includes personnel directly involved in ROP screening and treatment, those involved in the overall care of the babies, and support staff for the programme.
Managing the ROP care pathway for a premature baby is often complicated. It requires a trained multidisciplinary team with specific roles and responsibilities to implement protocols to prevent ROP; identify babies at risk for ROP; undertake ROP screening; provide ROP treatment; coordinate ROP screening, rescreening, and treatment; communicate with and educate parents; and manage data for the team. The neonatologist’s role in the ROP team is vital. They have overall responsibility for the babies under their care and are responsible for implementing neonatal care protocols and practices to identify all the babies at risk of ROP who require screening and ensure that babies are kept safe and as comfortable as possible during screening and treatment, as this can be distressing for them.
Neonatology nurses are the pillars of the neonatal intensive care unit. They ensure optimal day-to-day care of the babies. Trained neonatal nurses have specialist knowledge on best practices for ROP risk factors. They manage timely ROP screening and organise follow-up using local guidelines to ensure that no eligible babies are missed out. They are trained to put dilating drops into the baby’s eyes at the appropriate time prior to each screening. And they stay with the baby during the screening to assist the ophthalmologist and make sure the baby remains comfortable. Neonatology nurses also provide support and counselling to parents and carers on ROP and follow-up. The ROP coordinator or manager ensures that all eligible babies are screened and get their follow-up examinations.
When an eligible baby has been discharged from the neonatology unit, the coordinator makes sure the parents know when and where the screening will take place and that they get any assistance they need to attend the appointment. The coordinator also calls parents to remind them of appointments or if they miss any appointments. A neonatology nurse can be tasked to fill the role of ROP coordinator. It is always useful to have a team member responsible for counselling and educating parents about the importance of ROP screening and treatment and what it involves. They are essential in ensuring that parents fully understand what is involved and are on board with the screening and treatment of ROP for their baby.
In some units, this may be the same person as the ROP coordinator or another nurse. Most ROP programmes will also need a separate data manager who collects and enters data to monitor implementation of the programme. Monitoring allows the data manager to identify problems or issues and ensure these are addressed promptly.
At the national level, the Ministry of Health leads coordination of ROP services as part of the integrated care pathway for preterm babies across the health system. This involves managing multidisciplinary protocols between the obstetric, neonatology, and ophthalmology services. Local evidence needs to be reviewed and managed at this level for appropriate investment and governance. Global agencies, such as the WHO and UNICEF, are also important as they have global policies and guidelines on ROP care, which can be adapted for the local context. And, finally, it is also vital to include experts in ROP care from neonatology and ophthalmology, who can input on the latest evidence-based care for these babies. This national leadership team makes national recommendations for ROP prevention, screening, treatment, and follow-up.
It decides on the guidelines to be used and whether to adapt global guidelines or create new local guidelines; agrees how to disseminate the recommendations and guidelines; and ensures hospitals have the necessary resources to implement ROP programmes.
In summary, a successful hospital ROP programme requires a collaborative and strong leadership team, which must include an ophthalmologist, neonatologist, and neonatology nurse. The multidisciplinary ROP team includes a wide range
of roles: neonatal nurses, neonatologists, ophthalmologists, ROP coordinators, and data managers. To maintain a high standard of ROP care, adequate staffing and training must be provided and updated.
And key ROP stakeholders at the national level coordinate the distribution of neonatal services and establish the protocols, guidance, and monitoring on standards for ROP programmes within hospitals.

To be effective across a health system, retinopathy of prematurity (ROP) services cannot be developed in isolation by individual clinicians and teams. They need to be co-ordinated nationally and across the multidisciplinary teams within hospitals which provide neonatal care.

Case study: How the UK’s national ROP programme evolved

In the early 1980s, a study found that fewer than 10 ophthalmologists were screening for ROP in the UK (Wilson et al. 2008). As ROP treatment outcomes improved it became apparent that screening guidelines were needed and in 1990 the first UK guidelines for ROP screening and treatment were jointly drawn up by the Royal College of Ophthalmologists (RCO) and the British Association for Perinatal Medicine (BAPM). These empowered more clinicians to begin ROP screening and treatment and, by the mid 1990s, about 180 UK ophthalmologists were screening for ROP. In 1996 the guidelines were revised and extended to cover treatment, parent information and counselling, and the management of end-stage ROP (RCO and BAPM 1996).
Treatment advances and new research led to a further review in 2008 by the Royal College of Paediatrics & Child Health in partnership with the RCO and BAPM. Also involved was a wide multi-disciplinary guideline development group of ophthalmologists, neonatologists, paediatricians, a paediatric anaesthetist, neonatal nurses and parents and representatives from the premature baby charity BLISS. The review led to the publication of new, evidence-based nationally accepted UK guidelines for health professionals caring for babies at risk of developing ROP (Wilson et al. 2008). The guidelines provide a framework from which multidisciplinary clinical teams can make decisions and they also support the UK ROP programme to evaluate its performance and plan for appropriate resources.
To ensure prompt screening, treatment and follow up support, ROP services in the UK are organised around neonatal teams, ophthalmic teams and parents. The guidelines set out how, for each baby, a consultant ophthalmologist initiates an integrated care pathway at the initial ROP screening and a named neonatologist then manages follow up.

To ensure good governance and evidence based care it is important that all national ROP guidelines and supporting management protocols are reviewed by all partners. The video on this step describes who needs to be part of the team to provide a high quality ROP service. As you watch, consider what the biggest challenge is for those ROP teams when, as is the case in many settings, national ROP guidelines and protocols have not yet been developed?

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Retinopathy of Prematurity: Practical Approaches to Prevent Blindness

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