Impact case study database

Professor Wolke and colleagues’ cumulative research into babies born preterm or sick has had an impact on a large number of beneficiaries: policymakers, commissioners, healthcare professionals, education and social care services, parents and carers for children and young people born preterm, in the following ways:

Impact on European standards of care for follow-up of children or young people born preterm

Based on the politically identified need to achieve common standards of care and national guidelines across more than 30 countries, between 2013 and 2018 the European Foundation of the Care of Newborns and Infants (EFCNI) developed 96 standards of care [5.1], of which 15 were concerned with follow-up and continuing care. Wolke chaired the international expert committee and edited these 15 standards. The chair of EFCNI confirms that “ Professor Wolke's research was instrumental in informing the Follow-up and Continuing Care standards. Several of his research publications, for example ‘Universal gestational age effects on cognitive and basic mathematic processing’, helped inform guidelines on cognitive development of infants born very preterm or those infants with risk factors.” [5.2].

Wolke presented the standards to MEPs and interest groups at the European Parliament in Brussels in November 2018, highlighting the need for common standards of follow-up care across the member states, with approx. 650,000 preterm births per year. The standards have been endorsed by 120 healthcare professional societies and 51 parent organisations who support the call for action to implement them across Europe [5.1].

National and international adoption of PARCA-R as a screening tool for neonatal care in child development clinics

Professional guidelines in the UK: Since 2017 the PARCA-R has been recommended by NICE in its guidelines, Developmental follow-up of children and young people born preterm, to screen for cognitive and language problems in the follow-up of very preterm children at 2 years (affecting 7,000 very preterm children per year in the UK) [5.3].

International professional guidelines: EFCNI in one of its standards on ‘motor and neurological follow-up assessment’ recommends that healthcare professionals should “start a service that uses parent reports using screening questionnaires - Ages and Stages Questionnaire or PARCA-R” [5.1]. PARCA-R is the recommended patient outcome measure at 2 years in the Standard Set for Preterm and Hospitalised Newborn Health by the International Consortium of Health Outcomes Measurement (ICHOM), launched in August 2020 [5.4] (potentially 15 million newborns per year).

During the COVID-19 pandemic: The British Association of Neonatal Neurodevelopmental Follow Up recommended the use of PARCA-R for two years’ review in their March 2020 guidance for telephone–video clinics [5.5]. The Swiss Society of Neonatology (SwissNeoNet), which hosts the official medical quality register for Switzerland’s neonatal intensive care (level IIB) units and neonatal intermediate care (level III) units, also adopted the PARCA-R in 2020, when strict restrictions prevented face-to-face contact, to undertake routine follow-up assessments at 24 months of children born very preterm or who have suffered from neonatal hypoxic ischaemic encephalopathy (approx. 1,000 per year). The Co-ordinator of SwissNeoNet said: “[PARCA-R] has given perinatal centres and paediatric units the capacity to continue delivering their services remotely and, more importantly, ensuring that infant patient needs continue to be met.” [5.6a]. In addition, in April 2020, the National Maternity Hospital, Dublin, started using the PARCA-R in place of their key follow-up tool - the Bayley Scale, with at least 120 children benefitting from the PARCA-R assessments [5.6b].

Practitioners and parents: Since its standardisation (age-and sex-adjusted) in 2019, PARCA-R has been the preferred tool for cognitive screening of children at all gestations (630,000 per year in England and Wales) by healthcare professionals and parents. In December that year, the PARCA-R Technical and Interpretive Manual, describing the development and standardisation of the test and providing the norms tables needed to score the questionnaire by hand, was sent to all (204) neonatal units in the UK, reaching around 5,000 neonatal nurses, to support the test’s use in clinical practice. Its non-standardised version is available in 14 languages and since May 2018 has been accessed by more than 1,200 users, mainly professionals and parents (71%), in 67 countries. [5.7]

PARCA-R is free to download and can be completed by parents in around 15 minutes, compared to 2 hours for the resource-intense standard developmental or IQ testing. As an example, PARCA-R was instrumental in Glasgow’s Royal Hospital for Children (RHC)’s redesign of its neurodevelopment outpatient service in 2017. Before NICE guidance RHC had not used a standardised assessment at two years corrected age; for the last three years, 53 (100%) of families attending the clinic at two years corrected have completed a PARCA-R questionnaire [5.8]. The consultant neonatologist states that, “ Many children do not demonstrate their full potential within the outpatient clinic setting, particularly with language and cognition. The PARCA-R overcame this challenge while integrating families into the assessment process. Our families engaged well with the questionnaire, with every family completing the questionnaire in the first 2 years of its introduction.” [5.8].

Improved awareness and measurement of outcomes by healthcare and educational professionals

National guidelines: Informed by Wolke’s research, the NICE guidelines (2017) on the special needs of preterm children and lack of knowledge and training of teachers and educational psychologists recommended “ recording routine educational measures at key stage 2 (including special educational needs and disability) on an operational delivery network-wide basis, to allow educational outcomes at 11 years to be linked to neonatal information.” Healthcare professionals are also recommended to provide information about the risk and prevalence of developmental problems and disorders in babies born preterm to parents and carers, and offer to discuss this with them [5.3]. Wolke’s research informed the Swedish Neonatal Society’s guidelines for the follow-up of neonatal risk babies (2015), highlighting the prevalence of extremely premature babies that need extra support at school age [5.9].

Other guidelines for practitioners, parents and carers: Local authorities e.g. Hampshire County Council and NHS Hampshire Hospitals, drew on Wolke’s research to increase parents’, carers’ and teachers’ understanding of how premature children are affected in their development and learning [5.10]. Neonatal societies e.g. Royal College of Occupational Therapists, used his work in practice guidelines (2017) to raise awareness for occupational therapists about how preterm children remain at high risk for neurodevelopmental disability compared with term peers [5.11].

Department for Education (DfE) guidelines: DfE’s Advice on the admission of summer born children for local authorities and school admission authorities and parents (July 2013, revised September 2020 as Summer Born Children Starting School: Advice for parents) used Wolke's research as part of the evidence base to "…take account of the age group the child would have fallen into if born on time." [5.12a; 5.12b]. This guidance from DfE details the framework that UK school authorities must operate under and takes account of the needs of 12,000 parents of preterm children per year who are able to request a delayed enrolment date (around 15% of all requests) [5.12c].