PERIPrem: The scope, data and challenges

PERIPrem stands for ‘Perinatal Excellence to Reduce Injury in Premature Birth’ and is a bundle of 11 interventions launched in 2020 across the South West region that have a significant impact on brain injury and mortality rates in babies born preterm.

Implementation of PERIPrem is being encouraged across the rest of the country to help improve outcomes for premature babies.

Helping colleagues to understand more about the PERIPrem approach and what is involved, the Health Innovation Network ran a webinar on 15 December 2023 to provide more information.

The webinar featured Professor Karen Luyt, Professor of Neonatal Medicine; Dr Sarah Bates, Consultant Paediatrician and Neonatologist; Dr Hayley McBain, Evaluation Lead at Health Innovation South West; and Nathalie Delaney, Senior Programme Manager at Health Innovation West of England.

They explored:

  • The evidence base – what does the data tell us?
  • The PERIPrem story so far
  • The evaluation findings – what are the ingredients of successful implementation of PERIPrem?
  • Adaption and spread.

Watch a recording of the webinar here or read a summary of the main highlights below.

PERIPrem was introduced in 2020 and we now have the lowest infant and neonatal mortality rate in the country. The only thing we have done differently in this time is to start using the PERIPrem bundle across the region.

Professor Karen Luyt Professor of Neonatal Medicine, University of Bristol

The evidence base – what does the data tell us?

Karen Luyt opened the webinar with a compelling presentation on what the data tells us and the evidence base for PERIPrem.

Being born preterm is the leading cause of newborn brain injury (cerebral palsy ultimately) and child mortality worldwide but also here in England.

PERIPrem was designed by our team here in the South West because we had high mortality rates and high preterm brain injury rates. In 2018 we had the second highest newborn brain injury rate in England.

PERIPrem is an evidence-based care bundle of 11 interventions and each one of these either reduces mortality or severe brain injury or both by at least 50%.

You can see here how it aligns to other care bundles, such as Saving Babies’ Lives Version 3, which is the latest one we all need to be working towards and this has nine interventions that completely overlap with PERIPrem. Every trust needs to implement the Saving Babies’ Lives bundle by April 2024.

The UK has a high infant mortality rate considering the size of our economy. In the last 21 years this has fallen steadily, but we still have the highest infant mortality rate in Western Europe.

The National Child Mortality Database (NCMD) reports on this. In the year ending March 2020, when we look at the infant mortality rate (children that die under one-year of age), 69% are preterm babies (born before 37 weeks). One in three infant deaths are extremely preterm – babies born between 22- and 28-weeks’ gestation.

“If you want to impact the infant mortality rate, you need to reduce mortality associated with prematurity,” said Karen.

Tackling inequalities

When you compare infant mortality rates in the least deprived communities with the most deprived communities, you can see a clear divergence. While infant mortality is actually going down in our least deprived communities, it’s going up steeply in our most deprived communities. Again, the biggest contributor to this is prematurity.

If you look at infant mortality by ethnic group, it’s a similar picture. The rate for White babies has stayed flat but for Black or Black British, Asian or Asian British and other ethnicities the infant mortality rates are all going up. The increase has been the steepest and the most concerning for Black or Black British babies.

The drive to reduce infant mortality and brain injury is to have a positive effect on eliminating some of these inequalities.

The NCMD data is available at individual Integrated Care Board (ICB) level, and Karen urges colleagues to look at this local data via their neonatal operational delivery network (ODN).

Karen shared an example of an ICB whose infant mortality rate was below national average, but when its data was considered in more detail, clear disparities in mortality were evident for the most versus least deprived communities, as well as between different ethnic groups.

“Even though they appear to be doing really well in the bigger picture,” Karen explained, “this ICB has still got work to do to reduce these significant disparities in outcome that are hidden on first glance.”

Karen also looked at regional variation in the neonatal mortality rate, the measurement used by the maternity transformation programme.

The data shows significant regional variation, and the only region that has seen a reduction is the South West.

PERIPrem was introduced in 2020 and we now have the lowest infant and neonatal mortality rate in the country. The only thing we have done differently in this time is to start using the PERIPrem bundle across the region.

The South West region now has the lowest rates of severe brain injury and mortality rates for infants in England.

“In 2018 when the first data was published by Imperial this region had the second highest severe brain injury rate in England so we have shifted,” said Karen, “and the reason for that is directly down to PERIPrem.

“If as a trust you implement the PERIPrem care bundle, you would be completely compliant with Saving Babies’ Lives 3 and what’s expected of you in the three-year forward plan, and most importantly you’ll reduce mortality and brain injury especially for your most vulnerable populations – leaving no baby behind.”

Preterm birth is not what anybody plans when they become pregnant. It can feel very disempowering and terrifying. Parents we’ve worked with have told us how important it is to them to understand the journey and how the parent passport can play a small part.

Dr Sarah Bates Consultant Paediatrician & Neonatologist, Great Western Hospitals Swindon

The PERIPrem story so far

Sarah Bates is the National Quality Lead for BAPM and has worked alongside Karen and the team as the operational clinical lead for PERIPrem across the South West for the last four years. Sarah’s day job is as a neonatologist in Swindon. Sarah told the story of PERIPrem so far…

Back in 2018 both Karen and I were concerned about the high brain injury rates in the South West of England. Our mortality rates were also not where we would like them to be and we were not on track to meet the ambitious targets in the NHS long-term plan.

Karen and I were both working on similar projects in our respective areas around the interventions that had the strongest evidence base to push down those mortality and brain injury rates. We combined these together and, with the fantastic support from our regional academic health science networks (now health innovation networks) and the neonatal network for our region, PERIPrem was born.

But how do we close that ‘lost in translation’ gap to make sure that the evidence is used for every baby every single time? None of these interventions are particularly new and the compelling evidence has been out for a while. That is where we are struggling. We can see from the data that in some regions only between five and 10, or even maximally 15%, of babies are getting the simple evidence-based interventions that they need.

If you don’t know about PERIPrem, here’s a very simple animation that explains the bundle in about five minutes.

This is a snapshot of the PERIPrem bundle with its 11 different elements. We have a huge range of free, open-access resources to support these, which are all on the PERIPrem website, and all endorsed by the Neonatal Nurses Association. Access the resources here. We’ve also worked with BAPM and the British Intrapartum Care Society over the last 18 months to support further national resources inspired by these.

One of the things that we are so proud about is that families and parents with lived experience of preterm birth were part of our team from the very start. They helped us design the programme as part of the steering group and they are still a very powerful vocal and influential part of this work. Developing and delivering this in partnership with parents has been such a fantastic privilege.

We began planning PERIPrem around 2019 and we launched in the South West in April 2020, around the same time as the start of the Covid pandemic, which created huge challenges. To have achieved the kind of success with the impact on outcomes for babies and families despite a global pandemic is just fantastic.

Core to PERIPrem is the unit-level pre-term birth lead team that’s now referenced very strongly in Saving Babies Lives. We funded time for the neonatal nurse and the midwife – not for years, just a short implementation period – but as the operational lead for PERIPrem, I can tell you that I still spend a lot of time with those colleagues, because they are very much still there leading and implementing the project.

Another really core element of PERIPrem is the quality improvement (QI) coaching model at unit level; having those critical, supportive friends to help you with QI methodology and data but also just to listen and to continue to support and inspire. That dynamic was absolutely key.

Creating a common language

Also important was how we’ve shared success at unit and regional level, building community and momentum. When we embarked on this project, I didn’t know how much the branding the identity would really matter but it’s become a common language across our region and to use ‘PERIPrem’ almost as a verb to describe optimisation of a preterm journey. I absolutely see that as hugely impactful on teams but also on parents who move around the region and hear this common language.

One of the ways in which we do that is with the PERIPrem passport. Families and babies move around units across the region, and we have a fantastic story of one family that moved from one of our special care baby units to one of our neonatal intensive care units to one of our local neonatal units for delivery. They talk so powerfully about how it gave them such a sense of trust in the whole region and their care by having the same language used throughout.

But of course, it’s not just the South West now because many women may go to Wales and there they’re now hearing the same language with the PERIPrem Cymru programme.

The PERIPrem parent passport is one of the brilliant examples of the impact of having parents as partners on your improvement journey, which we have translated into lots of languages.

Preterm birth is not what anybody plans when they become pregnant. It’s not what the pregnancy magazines tell you to expect. It can feel very disempowering and terrifying. Parents we’ve worked with have told us how important it is to them to understand the journey and how the parent passport can play a small part.

One of the core ingredients for improvement has been the data. There’s lots of different sources of data out there. We have of course our Badgernet data which informs all our all our ODN dashboards as well as the NNAP data. We recognised the need early on to do much more detailed data collection to drive improvement through the optimisation tool. Data is undoubtedly a core element for improvement.

The wider spread of PERIPrem

I hope will be aware of the great BAPM toolkits. They’re a fantastic resource, particularly the most recently published Building Successful Perinatal Teams. If we are talking about core ingredients for success here, then a strong perinatal team has to be on that list.

Many of you who work in England will have been part of the NHS Getting It Right First Time (GIRFT) neonatology review led by Eleri Adams. She comments in the report that we are not on target to reach the NHS long-term plan and that she supports the approach PERIPrem is taking as we’ve shown what can be done with this structured collaborative approach with parent empowerment at the heart of this.

In 2022 we started looking at the high neonatal mortality and brain injury rates across Wales. The Welsh Health Minister announced a programme for maternity and neonatal safety support with a vision for Wales but we recognised that one of the quickest ways to drive that change was to implement a PERIPrem programme across Wales.

We received Welsh Government funding in January 2023, and launched PERIPrem Cymru the following February with a fantastic neonatal lead team and that preterm birth lead team concept in every health board in Wales. Their vision for Wales is something I really admire and support: Pob Babi Bob Tro, every baby every time. So it doesn’t matter where you’re born and it shouldn’t matter what your ethnic background is, you are entitled to receive all of the optimal perinatal evidence-based care no matter what.

Nearly 2,500 babies have been cared for to date using the PERIPrem bundle, and I want to share a couple of examples of the impact this is having. This is data recently released by the National Neonatal Audit Programme (NNAP).

One of the process measures, which I know teams around the country are working on, is achieving at least 60 seconds of delayed cord clamping for preterm babies. We know this has an enormous impact on mortality but it’s not being done frequently enough.

We can see that over two-thirds of babies are receiving this now but there’s huge variation with some regions’ rates at less than 50%. But the South West has remained a very positive outlier for this intervention. One of the reasons, is this isn’t just implemented in one or two of our big units. This is implemented in every single unit, local neonatal units, small special care baby units and neonatal intensive care units, working in partnership.

One of the other newer metrics reported by NNAP is early breast milk. By that we mean any maternal breast milk being received by babies by day two of life and this includes some very well 32- and 33-week babies.

Shockingly only 50% of babies are receiving this across England Wales and Scotland. We’ve got so much work to do. You can see Wales is performing well but again there is staggering variation. In the South West, 82% of babies are getting this.

One of the most recently published resources that references PERIPrem came out in late 2023 – a review of maternity initiatives in the English NHS was published by Mary Dixon-Woods in BMJ Quality and Safety. This review looked back over 10 years of large-scale maternity improvement programmes, and of those PERIPrem and PReCePT (and obviously PERIPrem was very inspired by PReCePT methodology) ranked in the top 10% on the quality metrics. Only two of the programmes included service user support right from the start and again that was PERIPrem and PReCePT.

The evaluation showed a clear increase in adherence to the bundle as a whole and its individual elements. In the surveys and interviews we were able to identify those vital ingredients that led to those changes in behaviour.

Dr Hayley McBain Evaluation Lead, Health Innovation South West

What are the ingredients of successful implementation of PERIPrem?

Dr Hayley McBain of Health Innovation South West led the evaluation of the PERIPrem programme and shared their findings.

Health Innovation South West were commissioned to undertake an independent evaluation of PERIPrem in 2020 focused on impact and process.

Each of the interventions in the bundle have a strong and robust evidence base but PERIPrem is not just about the bundle. It offers a supportive and structured implementation approach. Therefore, the evaluation explored whether that approach increased adherence to the bundle and what the ingredients for successful implementation were.

As a Health Innovation Network, we know the importance of that support and that innovation doesn’t just implement itself. We know it needs that structured approach around it.

The evaluation used mixed method. It looked at data on adherence over time, both during the implementation phase and prior to implementation, accompanied by qualitative interviews and surveys with unit staff and the QI coaches.

The evaluation showed a clear increase in adherence to the bundle as a whole and its individual elements. The PERIPrem approach led to statistically significant improvements in eight of the 11 individual elements of the bundle. 32% more mothers and babies were receiving all of the elements they were eligible for, and there was a 23% increase in the percentage of interventions received. PERIPrem was a facilitating and vital factor in these behaviour change outcomes.

In the surveys and interviews we were then able to identify those vital ingredients that led to those changes in behaviour:

Galvanise the support of the whole perinatal team

People spoke extensively about how the creation of a preterm birth lead team within the trust was imperative to successful delivery. This collaborative and integrated team really drove the project, and that included the leads and the champions as well as trust level support.

The evaluation showed that perinatal team culture improved, with significant improvements in team function and communication. PERIPrem helped to break down team hierarchies and created a psychologically safe space to challenge behaviour and practice.

Select appropriate leads

The lead was really vital to success. This could be frontline staff or senior clinicians from a range of different disciplines but what was really important is that they had a strong improvement mindset and enthusiasm and motivation for the project. We’ve seen that these leads continue to have a strong connection with PERIPrem beyond the initial implementation phase and are likely to remain a strong driver for the continued success of PERIPrem in the South West.

Recognise the time and resource needed

Securing time and resource was a relatively small investment but this was essential for success. Without the dedicated time and commitment of key people early on in the project, delivery would not have been successful – both in the initial phase and beyond, so it demonstrates that real value into the longer term.

Draw on all the available resources and support

The resources developed by the team were used extensively by all of the units in the region. They’re adaptable and based on robust evidence and they act as prompts and cues within units to change behaviour.

Quality improvement was at the core of the implementation approach and the coaches provided a supportive environment to learn and to design and test their change ideas. It gave them the motivation and opportunity to push projects forward. The measurement support provided by the team also enabled units to visualise and monitor their data over time, supporting their QI efforts.

Celebrate success and share learning

Celebrating successes within units and with the wider region was really important, as was creating a psychologically safe environment to also share failures and the learning from those. This was really valued by staff.

Break it down

PERIPrem is a complex care bundle – there are 11 different elements. Units faced this challenge head-on by breaking the bundle down. This wasn’t about addressing one particular intervention exclusively, but using the data to drive their decision making. They could address quick wins alongside thinking about more complex, challenging parts of the bundle and how things could be done differently depending on the intervention.

Harness the benefits of digital technology

Due to the pandemic, we shifted to an online communications and coaching strategy and that actually really benefited units in the South West due to our rural and coastal communities. The QUiPP app was also used to support interventions such as place of birth and steroids successfully.

The evidence base is important

The data and the evidence base were strong and they were the driving forces in the project. At the core of QI are the PDSA cycles and using those really drove adherence. Staff were able to co-produce improvement ideas together as a team, and seeing those changes in the data motivated staff.

The robust evidence base for the individual elements enhanced the bundle’s credibility but that was presented alongside patient stories that brought the impact to life pulled on the emotional elements of delivering these individual elements of the bundle.

Be innovative in how you engage people

Knowledge and skills are at the core of this. People might be aware of the evidence base but not necessarily in relation to preterm infants specifically. So increasing staff knowledge and also their skill set in being able to implement the bundle elements was really important. PERIPrem leads did that in really creative ways, particularly during the pandemic when bringing people together was difficult. They used different techniques such as simulative practice or tea trolley training, adapting their approach to address different needs and motivations.

Although there may be some adaptation about who does these roles, there should be strong focus on perinatal team working, ensuring both maternity and neonatal colleagues are part of the implementation team.

Nathalie Delaney Senior Programme Manager, Health Innovation West of England

Adapting PERIPrem to your local context

Nathalie Delaney, Senior Programme Manager at Health Innovation West of England provided guidance on what is core to the PERIPrem programme and what can be adapted to local needs.

Bundle elements

Whilst all 11 elements of the PERIPrem bundle are considered core, hydrocortisone and probiotics are both opt-outs. The timing aspects of elements is an area where there may be variation. All the definitions are aligned to those in Saving Babies Lives 3 and NNAP and if there are any changes to those definitions in the future, we will back-adapt these into PERIPrem.

Implementation of the elements as a bundle using QI methodology to resultant changes made to improvement bundle elements or factors that facilitate bundle adoption is core to the PERIPrem approach. But how each unit implements elements into pathways can be adapted for local pathways.

Team working and co-production

A focus on perinatal team working and co-production with parent partners is a core part of the approach. Although there may be some adaptation about who does these roles, there should be strong focus on perinatal team working, ensuring both maternity and neonatal colleagues are part of the implementation team.

Use of data

Learning and sharing from data is of particular importance, but although tools are provided to support this they are not mandated. In fact, the PERIPrem Cymru team have super-charged how they use data and have further developed it into an amazing dashboard!

Parent and clinical passports

Using parent and clinical passports are core elements of PERIPrem. Although these can be translated into local languages, the PERIPrem materials on the website are the ones approved by Neonatal Nurse Association (NNA) and so any changes would need re-application for NNA approval.

More generic passports are available from the BAPM website. Our resources have been back-adapted based on use elsewhere and incorporate changes from BAPM and PERIPrem Cymru.