Neonatal neurodevelopmental follow-up in the UK: a survey of current practice and future recommendations

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Methods Design : Online survey Setting: Neonatal units in England, Scotland and Wales (n=187) Participants: Lead neonatal clinicians for neurodevelopmental follow-up Results Eligible responses were received from 154 neonatal units (82%). This included 52/58 (89%) Neonatal Intensive Care Units, 68/86 (79%) Local Neonatal Units, and 34/43 (79%) Special Care Baby Units. Overall, 136 units (88%) offered neurodevelopmental follow-up for infants born <30 weeks' gestation and 75 (51%) for infants born <32 weeks' gestation. Out of 145 responses, 134 units (92%) offered follow-up to infants with brain injury requiring cooling therapy. The General Movements Assessment was used by 32 units (22%), PARCA-R questionnaire by 52 (35%) and Bayley-III by 80 (55%). A 2-year neurodevelopmental face-to-face appointment was offered to infants born <30 weeks' gestation by 129 units (83%); only ten units (6%) offered a 4-year assessment for infants born <28 weeks' gestation. Conclusions There is wide variation in the structure and content of neonatal neurodevelopmental follow-up. Greater standardisation of services is needed to reduce inequalities in care and improve family experiences. Neonatal Follow-up Neurodevelopment Preterm Premature Infant High-risk Figures Figure 1 Figure 2 Figure 3 Key Messages What is already known on this topic? Neonatal neurodevelopmental follow-up is a vital aspect of care for early detection of difficulties, timely access to intervention, promotion of long-term health and wellbeing and data collection to contribute to parental counselling. Delivery of neonatal follow-up in line with UK clinical guidelines has not been evaluated. What this study hopes to add There is wide variation in the inclusion criteria, content, and duration of neonatal neurodevelopmental follow-up in the UK. Only 6.8% of services reported offering infants born <28 weeks’ gestation a face-to-face appointment at four years of age. Recognition that the informational needs of parents may be conflated with the data requirements of clinicians, and this may contribute to suboptimal clinical service provision and limited reliable outcome data. How this study might affect research, practice, or policy This study highlights the lack of neurodevelopmental surveillance and support for children born <28 weeks’ gestation at four years of age. These data provide evidence for Operational Delivery Networks (ODNs) to understand how neonatal neurodevelopmental follow-up is delivered within their area. This will help inform families about available services, facilitate joint work, and deliver more equitable neonatal follow-up in the UK. Clinicians could improve information sharing with families by signposting to trusted local, community, online, or third-sector support. Further research is necessary to comprehensively understand neonatal and paediatric developmental services from a parent/caregiver perspective and a systems and processes perspective. Clinical policy and guidelines should provide further clarity regarding which services are most appropriate and responsible for delivering this care. Background Preterm birth and perinatal brain injury can have lifelong effects on infants, families, and society ( 1 , 2 ). Children born preterm are at risk of neurodevelopmental difficulties, and neonatal neurodevelopmental follow-up services play a vital role in comprehensive care ( 3 , 4 ). Careful monitoring and early intervention can ensure optimal growth and development, provide opportunities to offer guidance and support to families, and timely referrals to specialist services. Recommendations for neonatal neurodevelopmental follow-up services have been published worldwide ( 5 – 8 ). In the UK, the National Institute of Health and Care Excellence (NICE) guideline for the developmental follow-up of children and young people born preterm, published in 2017, recommends a standardised approach to neonatal follow-up for infants born < 30 weeks’ gestation, and those with additional risk factors likely to be associated with developmental problems (brain injury requiring therapeutic hypothermia, or lesion on cranial imaging) ( 5 ). The approach consists of monitoring a child’s development until they are two years of age, including a developmental assessment performed at 24 months of age and an evaluation at four years of age for children born < 28 weeks’ gestation ( 5 ). In the UK, neonatal services are delivered through Operational Delivery Networks (ODNs), and infants receive care where their requirements are best met within each network. Access to services depends on multiple factors, including the child’s healthcare needs and home postcode. There are three levels of care: Neonatal Intensive Care Unit (NICU) (typically 32 weeks). There has been more evaluation, policy, and clinical focus on care pathways preceding birth and inpatient acute care, with little attention to post-discharge pathways, resources, and evaluation of family priorities. For example, no data were collected regarding neonatal neurodevelopmental follow-up service provision in a recent national review of neonatal services ( 9 ), and no data have been reported regarding the ability of neonatal services to provide neonatal neurodevelopmental follow-up as recommended by NICE ( 5 ). This study aimed to describe the clinical service provision for neonatal neurodevelopmental follow-up offered by neonatal services in the UK. Methods Study Design A cross-sectional, web-based survey was designed to map current UK neonatal neurodevelopmental follow-up services (supplementary material). Neonatal and paediatric clinicians, including allied health professionals (AHPs) and individuals (parents/carers) with lived experience of preterm birth, refined the survey questions, which were informed by the NICE Guideline (NG72) ‘Developmental follow-up of children and young people born preterm’ ( 5 ). Components of NICE guideline recommendations focussed on in the survey include parents/careers having an agreed discharge plan; parents/carers being provided with a single point of contact for outreach care within the neonatal service; children who are eligible for enhanced developmental surveillance having at least two follow-up appointments in the first year and an assessment at two years that focuses on development; and children born before 28 weeks’ gestation having a developmental evaluation at four years of age. The Health Research Authority (HRA) online decision tool confirmed that a Research Ethics Committee review was not required as the study was designed and conducted to evaluate current clinical service provision. The NIHR Applied Research Collaboration West of England Evaluation Strategy Group publication ‘Best Practice in the Ethics and Governance of Service Evaluation’ was used to guide and ensure appropriate transparent design, distribution, analysis, and reporting. The survey was piloted to assess acceptability and comprehensibility. A second pilot was then undertaken with 18 clinicians. The survey was hosted online via JISC Surveys and distributed by email via a neonatal ODN lead contact (director or allied health professional lead) to all neonatal/neurodevelopmental follow-up lead clinicians of 187 UK neonatal services. The survey was open for eight weeks in July-Sept 2022, and two reminders were sent via the corresponding ODN team. Questions included eligibility for neonatal neurodevelopmental follow-up care, and the nature and duration of care provided, with a mixture of fixed-choice and open-ended items. Participants gave consent for their data to be shared with their specific neonatal ODN, to include anonymised data in a doctoral thesis, and to report anonymised data in a peer-reviewed journal. Data Analysis Data were analysed descriptively using Microsoft Excel. A chi-squared test was used to examine differences in the proportion of responses by unit level, with a significance threshold of p < 0.05. We received a small number of duplicate responses and, in a few cases, differences in reports by different healthcare professionals linked to one service. Duplicate surveys were compared, and responses were validated through neonatal operational delivery network lead contacts. ( 10 , 11 ) Results Characteristics of respondents Responses were received from 172 (92%) of 187 neonatal services. Of these, 154 responses (82%) were eligible for inclusion. Figure 1 shows the flow diagram for the overall response rate, and Table 1 shows response rates by unit classification (i.e., NICU, LNU and SCBU). There was no significant difference between response rates by unit classification (NICU, LNU, SCBU) (χ 2 =3.08, p=0.80). Table 1: Response Rate for unit classification Response Rate Units Responses % Total 187 154 82.4 NICU 58 52 89.7 LNU 86 68 79.1 SCBU 43 34 79.1 Chi-Squared statistic 3.08, p-value 0.797 Of 154 respondents, 124 (80.5 %) identified as medical doctors, 26 (17%) as AHPs, of whom 22 (85% of AHPs; 14% of all respondents) were physiotherapists, and 4 (15% of AHPs; 3%) were occupational therapists. The remaining four respondents (2.6%) identified as ‘nurses’ or ‘other’. Discharge Home from the Hospital Almost all neonatal services (96.1%) reported giving caregivers written communication, such as a discharge summary, before discharge home. In 46.8% of these units, the written information was jointly reviewed by a clinical member of staff and parents/carers for accuracy and understanding. In some services (42.9%), clinicians sometimes reviewed the information with parents, while 9.1% did not review it at all. 68 respondents highlighted reasons for the lack of review of written materials: time constraints and limited staff availability (Supplementary materials). Table 2 shows responses regarding providing tailored information in written discharge instructions. Plans for follow-up care (including information for parents about what to expect) were included by nearly all neonatal units (98.5%); health visitor details were less frequently included (42.2%). Only a few units signposted opportunities for peer support (9.6%) or other local support services (11.9%). Table 2: Responses of respondents regarding tailored information in written discharge instructions NICU n (%) LNU n (%) SCBU n (%) Total n (%) Risk factors for developmental difficulties 20 (44.4) 17 (28.8) 11 (35.5) 48 (35.6) Information about hearing screening 34 (75.6) 43 (72.9) 23 (74.2) 100 (74.1) Name and contact details of health visitors 20 (44.4) 19 (32.2) 18 (58.1) 57 (42.2) Plans for follow-up arrangements 45 (100.0) 57 (96.6) 31 (100.0) 133 (98.5) Sign posting to peer support services 2 (4.4) 6 (10.2) 5 (16.1) 13 (9.6) Sign posting to local support services 1 (2.2) 9 (15.3) 6 (19.4) 16 (11.9) Advice to contact GP/HV 7 (15.6) 9 (15.3) 3 (9.7) 19 (14.1) Of 146 responding units, 94.8% confirmed that they provided a single point of contact for outreach care post-discharge (Figure 2). Ten units (6.8%) responded with 'other' when asked about a single point of contact/discharge home team. Their free-text responses indicate a mixed approach. “Some babies go home under the care of the neonatal outreach team; others are given the NICU contact details” (Neonatal Paediatrician, service 29) “We have an outreach team for specific higher-risk babies. Most babies will have neonatal unit number and can use it for the first-week post-discharge for advice/signposting. After that, they are directed to their General Practitioner /Health Visitor” (Paediatrician, service 134) General follow-up care (follow-up not specifically for assessment of neurodevelopmental abilities) was offered by 87.7% of services. Just over half of these (53.9%) reported using remote digital services, while 45.5% did not use digital services, citing families' preference for face-to-face consultations. Of the centres using remote digital services, 83 (53.9%), 40 (48.2%) used the Attend Anywhere platform (known as NHS Near Me in Scotland), 20 (24.1%) used Badger Notes/Diaries platform, 26 (31.3%) used vCreate and 11 (13.2%) used Microsoft Teams. Table 3 shows the proportion of infants routinely eligible for referral to community therapy services at discharge from neonatal unit, by unit type, to community therapy services when discharged home. The criteria are not mutually exclusive. Table 3: Use of specific eligibility criteria for referral to community therapy services at discharge from neonatal unit, by unit type Criterion for routine referral to community therapy NICU n (%) LNU n (%) SCBU n (%) Total n (%) No criteria/none 22 (42.3) 30 (44.1) 9 (26.5) 61 (39.6) <26wks 20 (38.5) 31 (45.6) 19 (55.9) 70 (45.5) <28wks 17 (32.7) 32 (47.1) 20 (58.8) 69 (44.8) <30 wks 15 (28.8) 31 (45.6) 19 (55.9) 65 (42.2) <32 wks 5 (9.6) 13 (19.1) 9 (26.2) 27 (17.5) HIE (cooled) 22 (42.3) 30 (44.1) 17 (50.0) 69 (44.8) Clinical concerns 31 (59.6) 50 (73.5) 27 (79.4) 108 (70.1) NEC 4 (7.7) 12 (17.6) 4 (11.8) 20 (13.0) CLD (O2) 5 (9.6) 15 (22.1) 15 (44.1) 35 (22.7) Grade III/IV IVH 19 (36.5) 38 (55.9) 27 (79.4) 84 (54.5) Enhanced neurodevelopmental surveillance and support 102 services (66.2%) reported offering specific appointments for neurodevelopmental assessments, whilst 6 services (3.9%) did not provide this service, and 40 services (26%) combined developmental assessments with general follow-up care. 145 participants (94.2%) responded to a question about leadership of neurodevelopmental follow-up. 93 (63.3%) had a named lead clinician; of these, 88 (59.9%) identified as a doctor (neonatologist or paediatrician) and 8 (5.4%) as an AHP. 34 services (23.1%) indicated that medical consultants were responsible for developmental follow-up of their caseload. One hundred and forty-five participants (94.2%) responded to a question regarding inclusion criteria for enhanced neonatal developmental follow-up (Table 4). Table 4: Inclusion Criteria for enhanced neonatal neurodevelopmental follow-up NICU n (%) LNU n (%) SCBU n (%) Total n (%) Number of responses 50 (96.2) 64 (94.1) 31 (91.2) 145 (94.2) <28wks 48 (96.0) 63 (98.4) 28 (90.3) 193 (90.3) <30 wks 47 (94.0) 61 (95.3) 28 (90.3) 136 (88.3) <32 wks 25 (50.0) 35 (54.7) 15 (48.4) 75 (48.7) HIE (cooled) 48 (96.0) 58 (90.6) 28 (90.3) 134 (87.0) Clinical concerns with developmental abilities 40 (80.0) 55 (85.9) 27 (87.1) 122 (84.1) NEC 13 (26.0) 17 (26.6) 11 (35.5) 41 (28.3) CLD (home oxygen) 16 (32.0) 28 (43.8) 15 (48.4) 59 (40.7) Brain lesion on imaging 38 (76.0) 61 (95.3) 26 (83.9) 125 (86.2) Table 5 presents an overview of the tools and measures used for neurodevelopmental follow-up. 122 services (84%) used at least one specific developmental assessment, and 23 (15.9%) only used informal clinical assessment. The Bayley Scales of Infant and Toddler Development III (BSID-III) was used by most services (n=80, 55.2%). In total, 117 services (79.6%) provided infants and families with standard time points for neurodevelopmental follow-up, whilst thirty services (20.4%) provided appointments on an ‘as required basis’ based on clinical experience and judgement. Table 5: Tools and Measures used in Neonatal Developmental Follow-up NICU n % LNU n % SCBU n % Total n % Total Responses 50 (96.2) 64 (94.1) 31 (91.2) 145 (94.2) Alberta Infant Motor Scale (AIMS) 10 (20.0) 9 (14.1) 5 (16.1) 24 (16.6) Bayley Screening Test 3 (6.0) 9 (14.1) 3 (9.7) 15 (10.3) Bayley Scales of Infant Development II 1 (2.0) 2 (3.1) 2 (6.5) 5 (3.4) Bayley Scales of infant Development III 32 (64.0) 29 (45.3) 19 (61.3) 80 (55.2) Denver II Developmental Screening Test (DDSTII) 2 (4.0) 1 (1.6) 0 (0.0) 3 (2.1) General Movements Assessment (GMA) 17 (34.0) 10 (15.6) 5 (16.1) 32 (22.1) Griffiths Scale of Child Development III 4 (8.0) 1 (1.3) 1 (3.2) 6 (4.1) Hammersmith Infant Neurological Assessment (HINE) 13 (26.0) 8 (12.5) 5 (16.1) 26 (17.9) Informal Assessment Only (Clinical experience and judgement) 7 (14.0) 9 (14.1) 7 (22.6) 23 (15.9) PARCA-R 23 (46.0) 22 (34.4) 7 (22.6) 52 (35.9) Schedule of Growing Skills 11 (22.0) 17 (26.6) 10 (32.3) 38 (26.2) Strengths and Difficulties Questionnaire (SDQ) 1 (2.0) 2 (3.1) 3 (9.7) 12 (8.3) Neonatal Behavioural Assessment Scale (NBAS)/ Newborn Behavioural Observations (NBO) 5 (10.0) 4 (6.3) 3 (9.7) 12 (8.3) Badger 2-year Questionnaire 23 (46.0) 27 (42.2) 14 (45.2) 64 (44.1) Other (including Wechsler and ASQ) 5 (7.8) 5 (7.8) 1 (3.2) 11 (7.6) Out of 148 respondents, 129 (87.2%) offered a face-to-face neurodevelopmental follow-up appointment at 2 years of age for infants born < 30 weeks gestational age, which aligns with clinical guidelines (5). Only 5 services (3.4%) did not provide this, and 4 (9.5%) occasionally gave appointments at that stage. Participants were asked to identify which healthcare professionals were usually present at appointments; results (combine NICU, LNU and SCBU) are shown in Figure 3. Only 10 (6.8%) of services reported offering a face-to-face follow-up appointment to infants born <28 weeks’ gestation at 4 years of age, as recommended by NICE (5). 133 units (69.6%) did not offer a 4-year appointment, 20 units (13.5%) ‘sometimes’ offered this, and 13 units (8.8%) referred all infants born <28 weeks’ gestation to a community paediatrician for this assessment. Communication and Information Management Many services (129/146, 88.4%) provided a written summary to parents/carers regarding their infants’ developmental progress after follow-up appointments, and 97.3% communicated their findings to other healthcare professionals by letter. One hundred and twenty-seven services (86.4%) reported routinely recording information about the child’s abilities at the 2-year neurodevelopmental appointment on the Badger Neonatal database. Impact of the Covid-19 Pandemic Respondents in 120 (80.5%) services reported an impact of the Covid-19 pandemic on their follow-up service. Modifications included offering telephone (90 units, 71.4%) and video appointments (67 units, 53.2%). Over half of the units (74, 58.7%) continued with face-to-face services but with modifications such as personal protective equipment and social distancing. During this time, forty-four (34.9%) of services started using the Parent Report of Children’s Abilities-Revised (PARCA-R), a parent-reported tool. Discussion This study sought to describe the clinical service provision of neonatal follow-up care reported by neonatal service clinical leads in the UK. The findings revealed substantial variation in the content and delivery of services, parental information sharing, inclusion criteria, assessments and tools utilised, and the multidisciplinary professionals routinely involved. Many neonatal services do not conform to the best practice guidelines recommended by NICE ( 5 ). This disparity is evident in various ways, including a failure to implement recommended practices and the exclusion of certain elements that are known to be of paramount significance to parents. Our data reveals variability in the inclusion criteria, timing and tools/measures used for neurodevelopmental follow-up. Most services provide this to infants born before 30 weeks' gestation, those receiving therapeutic hypothermia for potential brain injury, or those with identified brain lesions on imaging until 2 years of age. The Bayley Scales of Infant and Toddler Development Third Edition (BSID-III) was the most commonly used assessment, despite not being recommended by NICE ( 5 ). The BSID-III norms underestimate impairment in children born extremely preterm, which calls into question the tool's validity for identifying those who need intervention. Recommendations have been made to address this ( 12 – 14 ). BSID assessments provide composite results and percentile ranks regarding child abilities; however, these composite scores, while clinically important, do not align with parental priorities and requirements ( 15 – 17 ). Further consideration and investigation need to be undertaken to understand clinicians’ reasoning and motives for using the BSID within their clinical services. A third of services report using the PARCA-R parent questionnaire ( 18 ), which is currently recommended in UK clinical guidelines ( 5 ). The PARCA-R is the only standardised parent-completed assessment of children's cognitive and language development, and it has a robust discriminatory ability to detect cognitive delay in very preterm infants ( 19 ). However, it does not assess motor development, and there have been broader questions about the ability of parent reported outcomes to capture specific skill deficits ( 20 ). Whilst there is potential for parent-report questions to assess functional motor impairment and predict later severe motor impairment ( 21 ), further work needs be undertaken to compare parent-reported and clinician-reported data to ensure that a holistic approach is provided. In addition, further research is warranted to examine the ‘dual purpose’ of the use of standardised assessments (including parent reported assessments) for both clinical and research aims. Conflating the informational needs of parents (to adequately address their queries about their child’s developmental abilities) with the data requirements of clinicians may contribute to suboptimal service delivery and limited accurate outcome data. Guidance for supporting infants at high risk of developmental difficulties after leaving acute neonatal care remains unclear. This has resulted in inconsistent access to services and uncertainty about which healthcare teams should provide follow-up care as the child grows older. While NICE guidelines set best practice standards, they are not mandatory, and only a few neonatal services (6.8%) provide a 4-year developmental follow-up appointment for children born before 28 weeks' gestation. Infants born extremely premature frequently experience difficulties with working memory, attention, and social communication and interaction ( 22 ), leading to greater academic and behavioural challenges throughout schooling ( 26 , 27 ). Consequently, a deeper comprehension of the learning needs of children born extremely preterm prior to school entry is crucial, facilitating early detection of educational requirements and enabling timely provision of support and interventions to optimise the child’s learning needs. The extent of this gap in clinical care remains unclear, as it is uncertain whether this service is offered by other paediatric providers. Nevertheless, our data indicate that only a small proportion of services routinely refer infants born under 28 weeks to community paediatric services for a 4-year developmental assessment, suggesting that the data does accurately reflect clinical service provision. The challenges in implementing a 4-year developmental assessment for extremely premature children may stem from insufficient resources within neonatal and paediatric professions to deliver this service. Many services lack routine inclusion of allied health professionals in specialist neurodevelopmental follow-up, despite clinical guidelines and professional recommendations ( 5 , 23 , 24 ). While recent investment has increased neonatal allied health provision for acute inpatient care, there remains a significant staffing shortfall compared to recommendations ( 25 ). Critically, no funding exists for neurodevelopmental follow-up, psychology, or community services for this high-risk patient group. Providing clear and comprehensive information for parents is of paramount importance, particularly at the time of their child's discharge from the hospital ( 11 , 26 – 28 ). This information should cover details of the child's inpatient care, investigations, prognosis, long-term outcomes, and future care needs, which is essential to enable parents to process the sudden preterm birth of their child and their experience of neonatal inpatient care. It facilitates their understanding of their child's future health, educational, and well-being requirements, and helps them navigate the complex landscape of available support ( 26 ). The study findings indicate that while most neonatal services provide written medical summaries to parents at discharge, only around half review the accuracy and comprehension of this information with parents. Furthermore, few services offer information to direct families to local, community, online, or third-sector support services, despite the importance of these resources to parents ( 11 , 26 ). It is unclear whether this is because the priority of healthcare professionals is on the immediate medical needs of the infant ( 26 ) or whether they lack awareness of the significance of signposting or the range of available services for parents ( 12 ). Adopting a family integrated approach in neonatal care (including neonatal follow-up care) means recognising the needs of the whole family as well as the infant ( 29 ), and lack of awareness by healthcare professionals regarding information and support needs of parents may lead to missed opportunities to connect families with valuable support. Improved survival rates of smaller and sicker infants make understanding and improving experiences and outcomes for children and their families more critical ( 16 ). Families are navigating care between complex organisational structures, including navigation of specialist, community and universal child health services ( 11 , 30 ). The lack of clear guidance on the transition of children from neonatal to community paediatric care has led to disparities in service access and uncertainty over which clinical services are responsible for neonatal follow-up care. Additionally, bridging the gap between services offered at 2 years and 4 years poses a challenge. Health visiting services are responsible for the 0–5-year element of the Universal Healthy Child Programme and are theoretically well-positioned to deliver further risk stratification for preterm-born children who may require more detailed and specialist assessment prior at 4 years of age. However, the capacity of health visiting teams to implement a population health preventative approach to adequately support families with preterm-born children is arguably limited ( 31 ). Many parents struggle to manage their preterm-born child's complex medical and developmental needs after discharge and rightfully expect the healthcare professionals supporting them to be well-trained and competent. However, it remains unclear whether health visiting teams possess the appropriate training, knowledge, or experience and time to support families after preterm birth. Additionally, the lack of well-defined care pathways between neonatal and paediatric services, as well as the insufficient funding and appropriate training for healthcare professionals within neonatal follow-up and community services, further hinders the ability to effectively identify and provide specialised assessment and intervention for those requiring additional support. The evolving plans of Integrated Care Boards to implement new care models for child health across the NHS should be welcomed to improve population-level health. More streamlined collaboration between universal, community, and specialist services will lead to enhanced infant and family outcomes and experiences. The study's strengths include a high response rate, enabling the capture of extensive data across the UK, which facilitated a direct and robust comparison of organisational practices against NICE guideline recommendations. Furthermore, the survey was collaboratively designed with key stakeholders, bolstering its face validity. However, as with all studies employing an online survey approach, this method has inherent limitations, notably the inability to fully address complexity or nuance, necessitating further in-depth investigation. Additionally, the study's specific focus on evaluating the capacity of neonatal services to provide neonatal neurodevelopmental follow-up as recommended by NICE may have overlooked any relevant services offered by community care providers, which the neonatal service providers may not have been aware of. Compartmentalisation of care and the need for robust clinical outcome data may contribute to uncertainty over healthcare provider responsibility and dissonance between the functional delivery of services (care with emphasis on the mechanisms and tools used to measure infant developmental outcomes) and the provision of healthcare services that demonstrate emotional and relational compassion and support. Conclusion This survey demonstrates the wide variability in content, structure, inclusion criteria, and duration of neonatal developmental follow-up care within the UK. Further consideration and evaluation are required to prioritise post-discharge neonatal care to explore ways to enhance and standardise the range of current services provided to better address the requirements of children and their families. Abbreviations NICE National Institute of Clinical Excellence NICU Neonatal Intensive Care Unit LNU Local Neonatal U nit SCBU Special Care Baby Unit ODN Operational Delivery Network AHP Allied Health Professional HRA Health Research Authority PT Physiotherapy OT Occupational Therapy SALT Speech and Language Therapy Ed Psych Educational Psychology Declarations Ethics Approval and consent to participate The Health Research Authority (HRA) online decision tool confirmed that a Research Ethics Committee review was not required as the study was designed and conducted to evaluate current clinical service provision. The NIHR Applied Research Collaboration West of England Evaluation Strategy Group publication ‘Best Practice in the Ethics and Governance of Service Evaluation’ was used to guide and ensure appropriate transparent design, distribution, analysis, and reporting. Participants gave consent for their data to be shared with their specific neonatal ODN, to include anonymised data in a doctoral thesis, and to report anonymised data in a peer-reviewed journal. Consent for publication No specific individual details are included. Participants gave consent for their data to be shared with their specific neonatal ODN, to include anonymised data in a doctoral thesis, and to report anonymised data in a peer-reviewed journal. Availability of data and materials Data were shared (with consent from survey respondents) to their specific neonatal operational delivery network lead managers/directors (if in Scotland, Wales or Northern Ireland, this was the BANNFU AHP representative) to contribute to clinical service delivery improvements. In addition, consent was sought for anonymised data being shared both within CMs PhD thesis and for submission to clinical peer review journal as part of full data set. The individual service responses are not publicly available. Competing Interests None declared Funding CM was awarded a National Institute of Health Research Clinical Doctoral Fellowship award (ICA-CDRF-2018-04-ST2-020) to complete this work as part of a PhD programme of work. Authors Contributors CM: study design and survey development, survey distribution, data analysis, manuscript writing and reviews, HC: expert advice, survey development and distribution, manuscript review, SJ: survey design and development, manuscript review, CE: study design, survey design, manuscript review, NK: study design, survey design, manuscript review, RT: study design, survey design, manuscript review, AB: study design, survey development, data analysis, manuscript review Patient and public involvement Individuals (parents/carers) with lived experience of preterm birth, as part of a parent advisory group contributed to overall PhD research design, including development of the survey and refinement of the survey questions. The study advisory group met regularly throughout the programme of work Acknowledgements The authors would like to thank the Neonatal Operational Delivery Network Lead Physiotherapists who contributed to the design and distribution of the survey and the members of the British Association of Neonatal Neurodevelopmental Follow-up (BANNFU) clinical service provision workstream for contributing to survey design, survey pilot and dissemination of findings. References Draper ES, Zeitlin J, Manktelow BN, Piedvache A, Cuttini M, Edstedt Bonamy AK, et al. EPICE cohort: two-year neurodevelopmental outcomes after very preterm birth. Arch Dis Child - Fetal Neonatal Ed. 2020 Jul;105(4):350–6. Petrou S, Yiu HH, Kwon J. Economic consequences of preterm birth: a systematic review of the recent literature (2009-2017). Arch Dis Child. 2019 May;104(5):456–65. Kotagal UR, Perlstein PH, Gamblian V, Donovan EF, Atherton HD. Description and evaluation of a program for the early discharge of infants from a neonatal intensive care unit. J Pediatr. 1995 Aug 1;127(2):285–90. Broyles RS, Tyson JE, Heyne ET, Heyne RJ, Hickman JF, Swint M, et al. Comprehensive Follow-up Care and Life-Threatening Illnesses Among High-Risk InfantsA Randomized Controlled Trial. JAMA. 2000 Oct 25;284(16):2070–6. NICE NI for H and CE. Overview | Developmental follow-up of children and young people born preterm | Guidance | NICE [Internet]. NICE; 2017 [cited 2023 Mar 8]. Available from: https://www.nice.org.uk/guidance/ng72 Hüning BM, Härtel C. European standards of care for newborn health: Transition from hospital to home. [Internet]. European Foundation for the Care of Newborn Infants; 2022. Available from: https://newborn-health-standards.org/wp-content/uploads/2022/08/2022_09_01_TEG_Follow_up_all.pdf Pan American Health Organisation. Evidence-based clinical practice guidelines for the follow-up of at-risk neonates. Abridged version [Internet]. Washington D.C: Pan American Health Organisation; 2021. Available from: https://iris.paho.org/bitstream/handle/10665.2/53245/PAHOFPLCLP200017_eng.pdf?sequence=1&isAllowed=y Scottish Perinatal Network. National Neonatal Discharge Planning and Follow-up Framework [Internet]. NHS Scotland; 2019 [cited 2023 Mar 29]. Available from: https://www.perinatalnetwork.scot/wp-content/uploads/2020/01/2019-11-Nat-Neo-Disch-Plan-FU-Framework-v1.0-for-printing.pdf Adams E, Harvey K, Sweeting M. Neonatology GIRFT Programme National Specialty Report [Internet]. 2022 Apr [cited 2023 Mar 8] p. 1–131. Available from: https://gettingitrightfirsttime.co.uk/medical_specialties/neonatology/ Ballantyne M, Benzies K, Rosenbaum P, Lodha A. Mothers’ and health care providers’ perspectives of the barriers and facilitators to attendance at Canadian neonatal follow-up programs. Child Care Health Dev. 2015 Sep;41(5):722–33. Komoriyama A, Paize F, Littlefair E, Dewhurst C, Gladstone M. A journey through follow‐up for neurodevelopmentally at‐risk infants—A qualitative study on views of parents and professionals in Liverpool. Child. 2019 Nov;45(6):808–14. Green CE, Tyson JE, Heyne RJ, Hintz SR, Vohr BR, Bann CM, et al. Use of term reference infants in assessing the developmental outcome of extremely preterm infants: lessons learned in a multicenter study. J Perinatol. 2023 Nov;43(11):1398–405. Anderson PJ, De Luca CR, Hutchinson E, Roberts G, Doyle LW, the Victorian Infant Collaborative Group. Underestimation of Developmental Delay by the New Bayley-III Scale. Arch Pediatr Adolesc Med. 2010 Apr 1;164(4):352–6. Johnson S, Moore T, Marlow N. Using the Bayley-III to assess neurodevelopmental delay: which cut-off should be used? Pediatr Res. 2014 May;75(5):670–4. Janvier A, Farlow B, Baardsnes J, Pearce R, Barrington KJ. Measuring and communicating meaningful outcomes in neonatology: A family perspective. Semin Perinatol. 2016 Dec;40(8):571–7. Hintz SR, deRegnier RA, Vohr BR. Outcomes of Preterm Infants: Shifting Focus, Extending the View. Clin Perinatol. 2023 Mar 1;50(1):1–16. Litt JS, Halfon N, Msall ME, Russ SA, Hintz SR. Ensuring Optimal Outcomes for Preterm Infants after NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up. Children. 2024 Jan 24;11(2):146. Johnson PhD S, Marlow DM FRCPCH N, Wolke PhD Dipl-Psych D, Davidson MD MSc FRCPCH FRCP FFPHM FAAP L, Marston MSc L, O’Hare MD FRCP FRCPCH A, et al. Validation of a parent report measure of cognitive development in very preterm infants. Dev Med Child Neurol. 2004;46(6):389–97. Picotti E, Bechtel N, Latal B, Borradori-Tolsa C, Bickle-Graz M, Grunt S, et al. Performance of the German version of the PARCA-R questionnaire as a developmental screening tool in two-year-old very preterm infants. Bhatt GC, editor. PLOS ONE. 2020 Sep 3;15(9):e0236289. Caesar R, Colditz PB, Cioni G, Boyd RN. Clinical tools used in young infants born very preterm to predict motor and cognitive delay (not cerebral palsy): a systematic review. Dev Med Child Neurol. 2021 Apr;63(4):387–95. Costa R, Aubert AM, Seppänen AV, Ådén U, Sarrechia L, Zemlin M, et al. Motor-related health care for 5-year-old children born extremely preterm with movement impairments. Dev Med Child Neurol. 2022;64(9):1131–44. McBryde M, Fitzallen GC, Liley HG, Taylor HG, Bora S. Academic Outcomes of School-Aged Children Born Preterm: A Systematic Review and Meta-analysis. JAMA Netw Open. 2020 Apr 3;3(4):e202027. BAPM. The British Association of Perinatal Medicine Service and Quality Standards for Provision of Neonatal Care in the UK [Internet]. British Association of Perinatal Medicine; 2022. Available from: https://hubble-live-assets.s3.amazonaws.com/bapm/file_asset/file/1494/BAPM_Service_Quality_Standards_FINAL.pdf Royal College of Occupational Therapists. Occupational therapy in neonatal services and early intervention. Practice guideline [Internet]. 2022. Available from: https://www.rcot.co.uk/practice-resources/rcot-publications/downloads/neonatal-services Bliss. Filling the gaps: A Spotlight on Allied Health Professional, Psychological and Pharmacy Roles in Neonatal Care [Internet]. BLISS Charity; 2025 Mar [cited 2025 Mar 19] p. 1–33. Available from: https://sr-bliss.s3.amazonaws.com/documents/Filling-the-gaps_final-1-2.pdf Hurt L, Odd D, Mann M, Beetham H, Dorgeat E, Isaac TC, et al. What matters to families about the healthcare of preterm or low birth weight infants: A qualitative evidence synthesis. Patient Educ Couns. 2023 Oct;115:107893. Davis-Strauss SL, Johnson E, Lubbe W. Information and Support Needs of Parents With Premature Infants: An Integrative Review. J Early Interv. 2021 Sep 1;43(3):199–220. Bater ML, Gould JF, Collins CT, Anderson PJ, Stark MJ. Child development education in the Neonatal Unit: Understanding parent developmental literacy needs, priorities and preferences. Patient Educ Couns. 2024 Feb 1;119:108058. Aagaard H, Hall ElisabethOC, Audulv Å, Ludvigsen MS, Westergren T, Fegran L. Parents’ experiences of transitioning to home with a very-low-birthweight infant: A meta-ethnography. J Neonatal Nurs [Internet]. 2022 Dec 9 [cited 2023 Mar 29]; Available from: https://www.sciencedirect.com/science/article/pii/S1355184122002186 Fortune A, Perkins E, Paize F, Palanisami B, Gladstone M. Managing mothers’ and fathers’ uncertainty during their journey through early neurodevelopmental follow-up for their high-risk infants—A qualitative account. Child Care Health Dev [Internet]. [cited 2023 Dec 14];n/a(n/a). Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/cch.13168 Liu M, Woodman J, Grath-Lone LM, Clery A, Bunting C, Bennett S, et al. Local area variation in health visiting contacts across England for children under age 5: a cross-sectional analysis of administrative data in England 2018-2020. Int J Popul Data Sci [Internet]. 2024 May 13 [cited 2025 Mar 4];9(2). Available from: https://ijpds.org/article/view/2382 Additional Declarations No competing interests reported. Supplementary Files NeonatalFUCMSupplementaryMaterial.docx Surveyappendixcomponenetsneonatalfollowup.docx SurveyblankPDF.pdf Cite Share Download PDF Status: Published Journal Publication published 01 Sep, 2025 Read the published version in BMC Pediatrics → Version 1 posted Editorial decision: Revision requested 21 May, 2025 Reviews received at journal 19 May, 2025 Reviews received at journal 01 May, 2025 Reviewers agreed at journal 26 Apr, 2025 Reviewers agreed at journal 24 Apr, 2025 Reviewers agreed at journal 24 Apr, 2025 Reviewers invited by journal 24 Apr, 2025 Editor assigned by journal 24 Apr, 2025 Editor invited by journal 24 Apr, 2025 Submission checks completed at journal 23 Apr, 2025 First submitted to journal 23 Apr, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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2","display":"","copyAsset":false,"role":"figure","size":41616,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eResponses to question: ‘Are parents/caregivers provided with a single point of contact for outreach care after discharge home from the neonatal unit?\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6464137/v1/28afbe3ee7fdc9bfe35520fe.jpg"},{"id":82136904,"identity":"be3cdc18-54fc-49b6-8a98-79c1acfb7790","added_by":"auto","created_at":"2025-05-07 06:15:31","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":41087,"visible":true,"origin":"","legend":"\u003cp\u003eHealthcare professionals usually present during neurodevelopmental follow-up clinic appointments\u003c/p\u003e","description":"","filename":"3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6464137/v1/fc68f79035cc4de6a8f140b8.jpg"},{"id":90827914,"identity":"9f3708ff-71c3-454e-9f51-d622df704d8a","added_by":"auto","created_at":"2025-09-08 16:02:56","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1828597,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6464137/v1/35d55b90-80aa-4586-b96e-5cf897df6e1c.pdf"},{"id":82136901,"identity":"7b5f90c4-2a0b-4dd3-b843-3caa52cd8e57","added_by":"auto","created_at":"2025-05-07 06:15:31","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":19951,"visible":true,"origin":"","legend":"","description":"","filename":"NeonatalFUCMSupplementaryMaterial.docx","url":"https://assets-eu.researchsquare.com/files/rs-6464137/v1/528844d7c9ca05c089b330b1.docx"},{"id":82140689,"identity":"6c33f3a0-6f7f-4d69-b92a-619c373f8d35","added_by":"auto","created_at":"2025-05-07 06:31:31","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":19436,"visible":true,"origin":"","legend":"","description":"","filename":"Surveyappendixcomponenetsneonatalfollowup.docx","url":"https://assets-eu.researchsquare.com/files/rs-6464137/v1/47b42a52ded10f1694544c96.docx"},{"id":82136906,"identity":"9c64c2ad-8c22-42b5-a93e-ea881887c523","added_by":"auto","created_at":"2025-05-07 06:15:31","extension":"pdf","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":372917,"visible":true,"origin":"","legend":"","description":"","filename":"SurveyblankPDF.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6464137/v1/3d4d7bd410e076cf8385030e.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Neonatal neurodevelopmental follow-up in the UK: a survey of current practice and future recommendations","fulltext":[{"header":"Key Messages","content":"\u003cp\u003e\u003cstrong\u003eWhat is already known on this topic?\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eNeonatal neurodevelopmental follow-up is a vital aspect of care for early detection of difficulties, timely access to intervention, promotion of long-term health and wellbeing and data collection to contribute to parental counselling.\u003c/li\u003e\n \u003cli\u003eDelivery of neonatal follow-up in line with UK clinical guidelines has not been evaluated.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e\u003cstrong\u003eWhat this study hopes to add\u003c/strong\u003e\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eThere is wide variation in the inclusion criteria, content, and duration of neonatal neurodevelopmental follow-up in the UK.\u003c/li\u003e\n \u003cli\u003e\u0026nbsp;Only 6.8% of services reported offering infants born \u0026lt;28 weeks’ gestation a face-to-face appointment at four years of age.\u003c/li\u003e\n \u003cli\u003eRecognition that the informational needs of parents may be conflated with the data requirements of clinicians, and this may contribute to suboptimal clinical service provision and limited reliable outcome data.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e\u003cstrong\u003eHow this study might affect research, practice, or policy\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eThis study highlights the lack of neurodevelopmental surveillance and support for children born \u0026lt;28 weeks’ gestation at four years of age.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eThese data provide evidence for Operational Delivery Networks (ODNs) to understand how neonatal neurodevelopmental follow-up is delivered within their area. This will help inform families about available services, facilitate joint work, and deliver more equitable neonatal follow-up in the UK.\u003c/li\u003e\n \u003cli\u003eClinicians could improve information sharing with families by signposting to trusted local, community, online, or third-sector support.\u0026nbsp;\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eFurther research is necessary to comprehensively understand neonatal and paediatric developmental services from a parent/caregiver perspective and a systems and processes perspective. Clinical policy and guidelines should provide further clarity regarding which services are most appropriate and responsible for delivering this care.\u003c/p\u003e"},{"header":"Background","content":"\u003cp\u003ePreterm birth and perinatal brain injury can have lifelong effects on infants, families, and society (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Children born preterm are at risk of neurodevelopmental difficulties, and neonatal neurodevelopmental follow-up services play a vital role in comprehensive care (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Careful monitoring and early intervention can ensure optimal growth and development, provide opportunities to offer guidance and support to families, and timely referrals to specialist services.\u003c/p\u003e \u003cp\u003eRecommendations for neonatal neurodevelopmental follow-up services have been published worldwide (\u003cspan additionalcitationids=\"CR6 CR7\" citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). In the UK, the National Institute of Health and Care Excellence (NICE) guideline for the developmental follow-up of children and young people born preterm, published in 2017, recommends a standardised approach to neonatal follow-up for infants born\u0026thinsp;\u0026lt;\u0026thinsp;30 weeks\u0026rsquo; gestation, and those with additional risk factors likely to be associated with developmental problems (brain injury requiring therapeutic hypothermia, or lesion on cranial imaging) (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). The approach consists of monitoring a child\u0026rsquo;s development until they are two years of age, including a developmental assessment performed at 24 months of age and an evaluation at four years of age for children born\u0026thinsp;\u0026lt;\u0026thinsp;28 weeks\u0026rsquo; gestation (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn the UK, neonatal services are delivered through Operational Delivery Networks (ODNs), and infants receive care where their requirements are best met within each network. Access to services depends on multiple factors, including the child\u0026rsquo;s healthcare needs and home postcode. There are three levels of care: Neonatal Intensive Care Unit (NICU) (typically\u0026thinsp;\u0026lt;\u0026thinsp;28 weeks\u0026rsquo; gestation), Local Neonatal Unit (LNU) (28\u0026ndash;32 weeks), and Special Care Baby Unit (SCBU) (\u0026gt;\u0026thinsp;32 weeks). There has been more evaluation, policy, and clinical focus on care pathways preceding birth and inpatient acute care, with little attention to post-discharge pathways, resources, and evaluation of family priorities. For example, no data were collected regarding neonatal neurodevelopmental follow-up service provision in a recent national review of neonatal services (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e), and no data have been reported regarding the ability of neonatal services to provide neonatal neurodevelopmental follow-up as recommended by NICE (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThis study aimed to describe the clinical service provision for neonatal neurodevelopmental follow-up offered by neonatal services in the UK.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy Design\u003c/h2\u003e \u003cp\u003eA cross-sectional, web-based survey was designed to map current UK neonatal neurodevelopmental follow-up services (supplementary material). Neonatal and paediatric clinicians, including allied health professionals (AHPs) and individuals (parents/carers) with lived experience of preterm birth, refined the survey questions, which were informed by the NICE Guideline (NG72) \u0026lsquo;Developmental follow-up of children and young people born preterm\u0026rsquo; (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Components of NICE guideline recommendations focussed on in the survey include parents/careers having an agreed discharge plan; parents/carers being provided with a single point of contact for outreach care within the neonatal service; children who are eligible for enhanced developmental surveillance having at least two follow-up appointments in the first year and an assessment at two years that focuses on development; and children born before 28 weeks\u0026rsquo; gestation having a developmental evaluation at four years of age. The Health Research Authority (HRA) online decision tool confirmed that a Research Ethics Committee review was not required as the study was designed and conducted to evaluate current clinical service provision. The NIHR Applied Research Collaboration West of England Evaluation Strategy Group publication \u0026lsquo;Best Practice in the Ethics and Governance of Service Evaluation\u0026rsquo; was used to guide and ensure appropriate transparent design, distribution, analysis, and reporting.\u003c/p\u003e \u003cp\u003eThe survey was piloted to assess acceptability and comprehensibility. A second pilot was then undertaken with 18 clinicians. The survey was hosted online via JISC Surveys and distributed by email via a neonatal ODN lead contact (director or allied health professional lead) to all neonatal/neurodevelopmental follow-up lead clinicians of 187 UK neonatal services. The survey was open for eight weeks in July-Sept 2022, and two reminders were sent via the corresponding ODN team. Questions included eligibility for neonatal neurodevelopmental follow-up care, and the nature and duration of care provided, with a mixture of fixed-choice and open-ended items. Participants gave consent for their data to be shared with their specific neonatal ODN, to include anonymised data in a doctoral thesis, and to report anonymised data in a peer-reviewed journal.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eData were analysed descriptively using Microsoft Excel. A chi-squared test was used to examine differences in the proportion of responses by unit level, with a significance threshold of p\u0026thinsp;\u0026lt;\u0026thinsp;0.05. We received a small number of duplicate responses and, in a few cases, differences in reports by different healthcare professionals linked to one service. Duplicate surveys were compared, and responses were validated through neonatal operational delivery network lead contacts. (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eCharacteristics of respondents\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eResponses were received from 172 (92%) of 187 neonatal services. Of these, 154 responses (82%) were eligible for inclusion. \u0026nbsp;Figure 1 shows the flow diagram for the overall response rate, and Table 1 shows response rates by unit classification (i.e., NICU, LNU and SCBU). There was no significant difference between response rates by unit classification (NICU, LNU, SCBU) (\u0026chi;\u003csup\u003e2\u003c/sup\u003e=3.08, p=0.80). \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1: Response Rate for unit classification\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"600\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"4\" style=\"width: 600px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eResponse Rate\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 122px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd style=\"width: 162px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eUnits\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 159px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eResponses\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 157px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e%\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 162px;\"\u003e\n \u003cp\u003e187\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 159px;\"\u003e\n \u003cp\u003e154\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 157px;\"\u003e\n \u003cp\u003e82.4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNICU\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 162px;\"\u003e\n \u003cp\u003e58\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 159px;\"\u003e\n \u003cp\u003e52\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 157px;\"\u003e\n \u003cp\u003e89.7\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLNU\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 162px;\"\u003e\n \u003cp\u003e86\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 159px;\"\u003e\n \u003cp\u003e68\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 157px;\"\u003e\n \u003cp\u003e79.1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSCBU\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 162px;\"\u003e\n \u003cp\u003e43\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 159px;\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 157px;\"\u003e\n \u003cp\u003e79.1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eChi-Squared statistic 3.08, p-value 0.797\u003c/p\u003e\n\u003cp\u003eOf 154 respondents, 124 (80.5 %) identified as medical doctors, 26 (17%) as AHPs, of whom 22 (85% of AHPs; 14% of all respondents) were physiotherapists, and 4 (15% of AHPs; 3%) were occupational therapists. The remaining four respondents (2.6%) identified as \u0026lsquo;nurses\u0026rsquo; or \u0026lsquo;other\u0026rsquo;.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDischarge Home from the Hospital\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAlmost all neonatal services (96.1%) reported giving caregivers written communication, such as a discharge summary, before discharge home. In 46.8% of these units, the written information was jointly reviewed by a clinical member of staff and parents/carers for accuracy and understanding. In some services (42.9%), clinicians sometimes reviewed the information with parents, while 9.1% did not review it at all. 68 respondents highlighted reasons for the lack of review of written materials: time constraints and limited staff availability (Supplementary materials).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 2 shows responses regarding providing tailored information in written discharge instructions. Plans for follow-up care (including information for parents about what to expect) were included by nearly all neonatal units (98.5%); health visitor details were less frequently included (42.2%). Only a few units signposted opportunities for peer support (9.6%) or other local support services (11.9%).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2: Responses of respondents regarding tailored information in written discharge instructions\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"595\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNICU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLNU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSCBU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRisk factors for developmental difficulties\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003cp\u003e(44.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003cp\u003e(28.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003cp\u003e(35.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e48\u003c/p\u003e\n \u003cp\u003e(35.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eInformation about hearing screening\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003cp\u003e(75.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e43\u003c/p\u003e\n \u003cp\u003e(72.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003cp\u003e(74.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e100\u003c/p\u003e\n \u003cp\u003e(74.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eName and contact details of health visitors\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003cp\u003e(44.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003cp\u003e(32.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003cp\u003e(58.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e57\u003c/p\u003e\n \u003cp\u003e(42.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePlans for follow-up arrangements\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e45\u003c/p\u003e\n \u003cp\u003e(100.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e57\u003c/p\u003e\n \u003cp\u003e(96.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003cp\u003e(100.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e133\u003c/p\u003e\n \u003cp\u003e(98.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSign posting to peer support services\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003cp\u003e(4.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003cp\u003e(10.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(16.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003cp\u003e(9.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSign posting to local support services\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e(2.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003cp\u003e(15.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003cp\u003e(19.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003cp\u003e(11.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAdvice to contact GP/HV\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003cp\u003e(15.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003cp\u003e(15.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003cp\u003e(9.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003cp\u003e(14.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eOf 146 responding units, 94.8% confirmed that they provided a single point of contact for outreach care post-discharge (Figure 2).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTen units (6.8%) responded with \u0026apos;other\u0026apos; when asked about a single point of contact/discharge home team. Their free-text responses indicate a mixed approach.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Some babies go home under the care of the neonatal outreach team; others are given the NICU contact details\u0026rdquo;\u0026nbsp;\u003c/em\u003e(Neonatal Paediatrician, service 29)\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;We have an outreach team for specific higher-risk babies. Most babies will have neonatal unit number and can use it for the first-week post-discharge for advice/signposting. After that, they are directed to their General Practitioner /Health Visitor\u0026rdquo;\u003c/em\u003e (Paediatrician, service 134)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eGeneral follow-up care (follow-up not specifically for assessment of neurodevelopmental abilities) was offered by 87.7% of services. Just over half of these (53.9%) reported using remote digital services, while 45.5% did not use digital services, citing families\u0026apos; preference for face-to-face consultations. Of the centres using remote digital services, 83 (53.9%), 40 (48.2%) used the Attend Anywhere platform (known as NHS Near Me in Scotland), 20 (24.1%) used Badger Notes/Diaries platform, 26 (31.3%) used vCreate and 11 (13.2%) used Microsoft Teams.\u003c/p\u003e\n\u003cp\u003eTable 3 shows the proportion of infants routinely eligible for referral to community therapy services at discharge from neonatal unit, by unit type, to community therapy services when discharged home. The criteria are not mutually exclusive.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3: Use of specific eligibility criteria for referral to community therapy services at discharge from neonatal unit, by unit type\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"595\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCriterion for routine referral to community therapy\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNICU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLNU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSCBU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNo criteria/none\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003cp\u003e(42.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e30\u003c/p\u003e\n \u003cp\u003e(44.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003cp\u003e(26.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e61\u003c/p\u003e\n \u003cp\u003e(39.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026lt;26wks\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003cp\u003e(38.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003cp\u003e(45.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003cp\u003e(55.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e70\u003c/p\u003e\n \u003cp\u003e(45.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026lt;28wks\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003cp\u003e(32.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003cp\u003e(47.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003cp\u003e(58.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e69\u003c/p\u003e\n \u003cp\u003e(44.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026lt;30 wks\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003cp\u003e(28.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003cp\u003e(45.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003cp\u003e(55.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e65\u003c/p\u003e\n \u003cp\u003e(42.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026lt;32 wks\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(9.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003cp\u003e(19.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003cp\u003e(26.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003cp\u003e(17.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHIE (cooled)\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003cp\u003e(42.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e30\u003c/p\u003e\n \u003cp\u003e(44.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003cp\u003e(50.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e69\u003c/p\u003e\n \u003cp\u003e(44.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eClinical concerns\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003cp\u003e(59.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e50\u003c/p\u003e\n \u003cp\u003e(73.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003cp\u003e(79.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e108\u003c/p\u003e\n \u003cp\u003e(70.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNEC\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003cp\u003e(7.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003cp\u003e(17.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003cp\u003e(11.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003cp\u003e(13.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCLD (O2)\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(9.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003cp\u003e(22.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003cp\u003e(44.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e35\u003c/p\u003e\n \u003cp\u003e(22.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGrade III/IV IVH\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003cp\u003e(36.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003cp\u003e(55.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003cp\u003e(79.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 111px;\"\u003e\n \u003cp\u003e84\u003c/p\u003e\n \u003cp\u003e(54.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eEnhanced neurodevelopmental surveillance and support\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e102 services (66.2%) reported offering specific appointments for neurodevelopmental assessments, whilst 6 services (3.9%) did not provide this service, and 40 services (26%) combined developmental assessments with general follow-up care. 145 participants (94.2%) responded to a question about leadership of neurodevelopmental follow-up. 93 (63.3%) had a named lead clinician; of these, 88 (59.9%) identified as a doctor (neonatologist or paediatrician) and 8 (5.4%) as an AHP. 34 services (23.1%) indicated that medical consultants were responsible for developmental follow-up of their caseload.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOne hundred and forty-five participants (94.2%) responded to a question regarding inclusion criteria for enhanced neonatal developmental follow-up (Table 4).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 4: Inclusion Criteria for enhanced neonatal neurodevelopmental follow-up\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"604\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNICU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLNU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSCBU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber of responses\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e50\u003c/p\u003e\n \u003cp\u003e(96.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e64\u003c/p\u003e\n \u003cp\u003e(94.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003cp\u003e(91.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e145\u003c/p\u003e\n \u003cp\u003e(94.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026lt;28wks\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e48\u003c/p\u003e\n \u003cp\u003e(96.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e63\u003c/p\u003e\n \u003cp\u003e(98.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e28\u003c/p\u003e\n \u003cp\u003e(90.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e193\u003c/p\u003e\n \u003cp\u003e(90.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026lt;30 wks\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e47\u003c/p\u003e\n \u003cp\u003e(94.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e61\u003c/p\u003e\n \u003cp\u003e(95.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e28\u003c/p\u003e\n \u003cp\u003e(90.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e136\u003c/p\u003e\n \u003cp\u003e(88.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026lt;32 wks\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003cp\u003e(50.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e35\u003c/p\u003e\n \u003cp\u003e(54.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003cp\u003e(48.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e75\u003c/p\u003e\n \u003cp\u003e(48.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHIE (cooled)\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e48\u003c/p\u003e\n \u003cp\u003e(96.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e58\u003c/p\u003e\n \u003cp\u003e(90.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e28\u003c/p\u003e\n \u003cp\u003e(90.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e134\u003c/p\u003e\n \u003cp\u003e(87.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eClinical concerns with developmental abilities\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e40\u003c/p\u003e\n \u003cp\u003e(80.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e55\u003c/p\u003e\n \u003cp\u003e(85.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003cp\u003e(87.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e122\u003c/p\u003e\n \u003cp\u003e(84.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNEC\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003cp\u003e(26.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003cp\u003e(26.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003cp\u003e(35.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e41\u003c/p\u003e\n \u003cp\u003e(28.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCLD (home oxygen)\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003cp\u003e(32.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e28\u003c/p\u003e\n \u003cp\u003e(43.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003cp\u003e(48.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e59\u003c/p\u003e\n \u003cp\u003e(40.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBrain lesion on imaging\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003cp\u003e(76.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e61\u003c/p\u003e\n \u003cp\u003e(95.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e26\u003c/p\u003e\n \u003cp\u003e(83.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 113px;\"\u003e\n \u003cp\u003e125\u003c/p\u003e\n \u003cp\u003e(86.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eTable 5 presents an overview of the tools and measures used for neurodevelopmental follow-up. 122 services (84%) used at least one specific developmental assessment, and 23 (15.9%) only used informal clinical assessment. The Bayley Scales of Infant and Toddler Development III (BSID-III) was used by most services (n=80, 55.2%). In total, 117 services (79.6%) provided infants and families with standard time points for neurodevelopmental follow-up, whilst thirty services (20.4%) provided appointments on an \u0026lsquo;as required basis\u0026rsquo; based on clinical experience and judgement.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 5: \u0026nbsp;Tools and Measures used in Neonatal Developmental Follow-up\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"595\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNICU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e%\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLNU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e%\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSCBU\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e%\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e%\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTotal Responses\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e50\u003c/p\u003e\n \u003cp\u003e(96.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e64\u003c/p\u003e\n \u003cp\u003e(94.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e31\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e(91.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e145\u003c/p\u003e\n \u003cp\u003e(94.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAlberta Infant Motor Scale\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(AIMS)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003cp\u003e(20.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003cp\u003e(14.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(16.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003cp\u003e(16.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBayley Screening Test\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003cp\u003e(6.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003cp\u003e(14.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003cp\u003e(9.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003cp\u003e(10.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBayley Scales of Infant Development II\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e(2.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003cp\u003e(3.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003cp\u003e(6.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(3.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBayley Scales of infant Development III\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003cp\u003e(64.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003cp\u003e(45.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003cp\u003e(61.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e80\u003c/p\u003e\n \u003cp\u003e(55.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDenver II Developmental Screening Test\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(DDSTII)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003cp\u003e(4.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e(1.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003cp\u003e(0.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003cp\u003e(2.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGeneral Movements Assessment\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(GMA)\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003cp\u003e(34.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003cp\u003e(15.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(16.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003cp\u003e(22.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGriffiths Scale of Child Development III\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003cp\u003e(8.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e(1.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e(3.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003cp\u003e(4.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHammersmith Infant Neurological Assessment\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(HINE)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003cp\u003e(26.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003cp\u003e(12.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(16.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e26\u003c/p\u003e\n \u003cp\u003e(17.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eInformal Assessment Only\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(Clinical experience and judgement)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003cp\u003e(14.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003cp\u003e(14.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003cp\u003e(22.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003cp\u003e(15.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePARCA-R\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003cp\u003e(46.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003cp\u003e(34.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003cp\u003e(22.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e52\u003c/p\u003e\n \u003cp\u003e(35.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSchedule of Growing Skills\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003cp\u003e(22.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003cp\u003e(26.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003cp\u003e(32.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003cp\u003e(26.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eStrengths and Difficulties Questionnaire\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(SDQ)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e(2.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003cp\u003e(3.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003cp\u003e(9.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003cp\u003e(8.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNeonatal Behavioural Assessment Scale (NBAS)/ Newborn Behavioural Observations\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(NBO)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(10.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003cp\u003e(6.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003cp\u003e(9.7)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003cp\u003e(8.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eBadger 2-year Questionnaire\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003cp\u003e(46.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003cp\u003e(42.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003cp\u003e(45.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e64\u003c/p\u003e\n \u003cp\u003e(44.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 217px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eOther\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(including Wechsler and ASQ)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(7.8)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003cp\u003e(7.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 94px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e(3.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 95px;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003cp\u003e(7.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cbr\u003e\u003c/strong\u003eOut of 148 respondents, 129 (87.2%) offered a face-to-face neurodevelopmental follow-up appointment at 2 years of age for infants born \u0026lt; 30 weeks gestational age, which aligns with clinical guidelines (5). Only 5 services (3.4%) did not provide this, and 4 (9.5%) occasionally gave appointments at that stage. Participants were asked to identify which healthcare professionals were usually present at appointments; results (combine NICU, LNU and SCBU) are shown in Figure 3.\u003c/p\u003e\n\u003cp\u003eOnly 10 (6.8%) of services reported offering a face-to-face follow-up appointment to infants born \u0026lt;28 weeks\u0026rsquo; gestation at 4 years of age, as recommended by NICE (5). 133 units (69.6%) did not offer a 4-year appointment, 20 units (13.5%) \u0026lsquo;sometimes\u0026rsquo; offered this, and 13 units (8.8%) referred all infants born \u0026lt;28 weeks\u0026rsquo; gestation to a community paediatrician for this assessment.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCommunication and Information Management\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMany services (129/146, 88.4%) provided a written summary to parents/carers regarding their infants\u0026rsquo; developmental progress after follow-up appointments, and 97.3% communicated their findings to other healthcare professionals by letter. One hundred and twenty-seven services (86.4%) reported routinely recording information about the child\u0026rsquo;s abilities at the 2-year neurodevelopmental appointment on the Badger Neonatal database.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eImpact of the Covid-19 Pandemic\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRespondents in 120 (80.5%) services reported an impact of the Covid-19 pandemic on their follow-up service. Modifications included offering telephone (90 units, 71.4%) and video appointments (67 units, 53.2%). Over half of the units (74, 58.7%) continued with face-to-face services but with modifications such as personal protective equipment and social distancing. During this time, forty-four (34.9%) of services started using the Parent Report of Children\u0026rsquo;s Abilities-Revised (PARCA-R), a parent-reported tool.\u0026nbsp;\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003e This study sought to describe the clinical service provision of neonatal follow-up care reported by neonatal service clinical leads in the UK. The findings revealed substantial variation in the content and delivery of services, parental information sharing, inclusion criteria, assessments and tools utilised, and the multidisciplinary professionals routinely involved. Many neonatal services do not conform to the best practice guidelines recommended by NICE (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). This disparity is evident in various ways, including a failure to implement recommended practices and the exclusion of certain elements that are known to be of paramount significance to parents.\u003c/p\u003e \u003cp\u003eOur data reveals variability in the inclusion criteria, timing and tools/measures used for neurodevelopmental follow-up. Most services provide this to infants born before 30 weeks' gestation, those receiving therapeutic hypothermia for potential brain injury, or those with identified brain lesions on imaging until 2 years of age. The Bayley Scales of Infant and Toddler Development Third Edition (BSID-III) was the most commonly used assessment, despite not being recommended by NICE (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). The BSID-III norms underestimate impairment in children born extremely preterm, which calls into question the tool's validity for identifying those who need intervention. Recommendations have been made to address this (\u003cspan additionalcitationids=\"CR13\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). BSID assessments provide composite results and percentile ranks regarding child abilities; however, these composite scores, while clinically important, do not align with parental priorities and requirements (\u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Further consideration and investigation need to be undertaken to understand clinicians\u0026rsquo; reasoning and motives for using the BSID within their clinical services. A third of services report using the PARCA-R parent questionnaire (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e), which is currently recommended in UK clinical guidelines (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). The PARCA-R is the only standardised parent-completed assessment of children's cognitive and language development, and it has a robust discriminatory ability to detect cognitive delay in very preterm infants (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). However, it does not assess motor development, and there have been broader questions about the ability of parent reported outcomes to capture specific skill deficits (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Whilst there is potential for parent-report questions to assess functional motor impairment and predict later severe motor impairment (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e), further work needs be undertaken to compare parent-reported and clinician-reported data to ensure that a holistic approach is provided. In addition, further research is warranted to examine the \u0026lsquo;dual purpose\u0026rsquo; of the use of standardised assessments (including parent reported assessments) for both clinical and research aims. Conflating the informational needs of parents (to adequately address their queries about their child\u0026rsquo;s developmental abilities) with the data requirements of clinicians may contribute to suboptimal service delivery and limited accurate outcome data.\u003c/p\u003e \u003cp\u003eGuidance for supporting infants at high risk of developmental difficulties after leaving acute neonatal care remains unclear. This has resulted in inconsistent access to services and uncertainty about which healthcare teams should provide follow-up care as the child grows older. While NICE guidelines set best practice standards, they are not mandatory, and only a few neonatal services (6.8%) provide a 4-year developmental follow-up appointment for children born before 28 weeks' gestation. Infants born extremely premature frequently experience difficulties with working memory, attention, and social communication and interaction (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), leading to greater academic and behavioural challenges throughout schooling (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). Consequently, a deeper comprehension of the learning needs of children born extremely preterm prior to school entry is crucial, facilitating early detection of educational requirements and enabling timely provision of support and interventions to optimise the child\u0026rsquo;s learning needs. The extent of this gap in clinical care remains unclear, as it is uncertain whether this service is offered by other paediatric providers. Nevertheless, our data indicate that only a small proportion of services routinely refer infants born under 28 weeks to community paediatric services for a 4-year developmental assessment, suggesting that the data does accurately reflect clinical service provision. The challenges in implementing a 4-year developmental assessment for extremely premature children may stem from insufficient resources within neonatal and paediatric professions to deliver this service. Many services lack routine inclusion of allied health professionals in specialist neurodevelopmental follow-up, despite clinical guidelines and professional recommendations (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). While recent investment has increased neonatal allied health provision for acute inpatient care, there remains a significant staffing shortfall compared to recommendations (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e). Critically, no funding exists for neurodevelopmental follow-up, psychology, or community services for this high-risk patient group.\u003c/p\u003e \u003cp\u003eProviding clear and comprehensive information for parents is of paramount importance, particularly at the time of their child's discharge from the hospital (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan additionalcitationids=\"CR27\" citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). This information should cover details of the child's inpatient care, investigations, prognosis, long-term outcomes, and future care needs, which is essential to enable parents to process the sudden preterm birth of their child and their experience of neonatal inpatient care. It facilitates their understanding of their child's future health, educational, and well-being requirements, and helps them navigate the complex landscape of available support\u003c/p\u003e \u003cp\u003e(\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). The study findings indicate that while most neonatal services provide written medical summaries to parents at discharge, only around half review the accuracy and comprehension of this information with parents. Furthermore, few services offer information to direct families to local, community, online, or third-sector support services, despite the importance of these resources to parents (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). It is unclear whether this is because the priority of healthcare professionals is on the immediate medical needs of the infant (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e) or whether they lack awareness of the significance of signposting or the range of available services for parents (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Adopting a family integrated approach in neonatal care (including neonatal follow-up care) means recognising the needs of the whole family as well as the infant (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e), and lack of awareness by healthcare professionals regarding information and support needs of parents may lead to missed opportunities to connect families with valuable support.\u003c/p\u003e \u003cp\u003eImproved survival rates of smaller and sicker infants make understanding and improving experiences and outcomes for children and their families more critical (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Families are navigating care between complex organisational structures, including navigation of specialist, community and universal child health services (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). The lack of clear guidance on the transition of children from neonatal to community paediatric care has led to disparities in service access and uncertainty over which clinical services are responsible for neonatal follow-up care. Additionally, bridging the gap between services offered at 2 years and 4 years poses a challenge. Health visiting services are responsible for the 0\u0026ndash;5-year element of the Universal Healthy Child Programme and are theoretically well-positioned to deliver further risk stratification for preterm-born children who may require more detailed and specialist assessment prior at 4 years of age. However, the capacity of health visiting teams to implement a population health preventative approach to adequately support families with preterm-born children is arguably limited (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). Many parents struggle to manage their preterm-born child's complex medical and developmental needs after discharge and rightfully expect the healthcare professionals supporting them to be well-trained and competent. However, it remains unclear whether health visiting teams possess the appropriate training, knowledge, or experience and time to support families after preterm birth. Additionally, the lack of well-defined care pathways between neonatal and paediatric services, as well as the insufficient funding and appropriate training for healthcare professionals within neonatal follow-up and community services, further hinders the ability to effectively identify and provide specialised assessment and intervention for those requiring additional support. The evolving plans of Integrated Care Boards to implement new care models for child health across the NHS should be welcomed to improve population-level health. More streamlined collaboration between universal, community, and specialist services will lead to enhanced infant and family outcomes and experiences.\u003c/p\u003e \u003cp\u003e The study's strengths include a high response rate, enabling the capture of extensive data across the UK, which facilitated a direct and robust comparison of organisational practices against NICE guideline recommendations. Furthermore, the survey was collaboratively designed with key stakeholders, bolstering its face validity. However, as with all studies employing an online survey approach, this method has inherent limitations, notably the inability to fully address complexity or nuance, necessitating further in-depth investigation. Additionally, the study's specific focus on evaluating the capacity of neonatal services to provide neonatal neurodevelopmental follow-up as recommended by NICE may have overlooked any relevant services offered by community care providers, which the neonatal service providers may not have been aware of. Compartmentalisation of care and the need for robust clinical outcome data may contribute to uncertainty over healthcare provider responsibility and dissonance between the functional delivery of services (care with emphasis on the mechanisms and tools used to measure infant developmental outcomes) and the provision of healthcare services that demonstrate emotional and relational compassion and support.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003e This survey demonstrates the wide variability in content, structure, inclusion criteria, and duration of neonatal developmental follow-up care within the UK. Further consideration and evaluation are required to prioritise post-discharge neonatal care to explore ways to enhance and standardise the range of current services provided to better address the requirements of children and their families.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eNICE\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;National Institute of Clinical Excellence\u003c/p\u003e\n\u003cp\u003eNICU\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Neonatal Intensive Care Unit\u003c/p\u003e\n\u003cp\u003eLNU\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Local Neonatal U nit\u003c/p\u003e\n\u003cp\u003eSCBU\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Special Care Baby Unit\u003c/p\u003e\n\u003cp\u003eODN\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Operational Delivery Network\u003c/p\u003e\n\u003cp\u003eAHP\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Allied Health Professional\u003c/p\u003e\n\u003cp\u003eHRA \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Health Research Authority\u003c/p\u003e\n\u003cp\u003ePT\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Physiotherapy\u003c/p\u003e\n\u003cp\u003eOT\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Occupational Therapy\u003c/p\u003e\n\u003cp\u003eSALT\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Speech and Language Therapy\u003c/p\u003e\n\u003cp\u003eEd Psych \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Educational Psychology\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics Approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe Health Research Authority (HRA) online decision tool confirmed that a Research Ethics Committee review was not required as the study was designed and conducted to evaluate current clinical service provision. The NIHR Applied Research Collaboration West of England Evaluation Strategy Group publication \u0026lsquo;Best Practice in the Ethics and Governance of Service Evaluation\u0026rsquo; was used to guide and ensure appropriate transparent design, distribution, analysis, and reporting. Participants gave consent for their data to be shared with their specific neonatal ODN, to include anonymised data in a doctoral thesis, and to report anonymised data in a peer-reviewed journal.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNo specific individual details are included. Participants gave consent for their data to be shared with their specific neonatal ODN, to include anonymised data in a doctoral thesis, and to report anonymised data in a peer-reviewed journal.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData were shared (with consent from survey respondents) to their specific neonatal operational delivery network lead managers/directors (if in Scotland, Wales or Northern Ireland, this was the BANNFU AHP representative) to contribute to clinical service delivery improvements. In addition, consent was sought for anonymised data being shared both within CMs PhD thesis and for submission to clinical peer review journal as part of full data set. The individual service responses are not publicly available.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNone declared\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCM was awarded a National Institute of Health Research Clinical Doctoral Fellowship award (ICA-CDRF-2018-04-ST2-020) to complete this work as part of a PhD programme of work.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors Contributors\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCM: study design and survey development, survey distribution, data analysis, manuscript writing and reviews, HC: expert advice, survey development and distribution, manuscript review, SJ: survey design and development, manuscript review, CE: study design, survey design, manuscript review, NK: study design, survey design, manuscript review, RT: study design, survey design, manuscript review, AB: study design, survey development, data analysis, manuscript review\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePatient and public involvement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIndividuals (parents/carers) with lived experience of preterm birth, as part of a parent advisory group contributed to overall PhD research design, including development of the survey and refinement of the survey questions. The study advisory group met regularly throughout the programme of work\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to thank the Neonatal Operational Delivery Network Lead Physiotherapists who contributed to the design and distribution of the survey and the members of the British Association of Neonatal Neurodevelopmental Follow-up (BANNFU) clinical service provision workstream for contributing to survey design, survey pilot and dissemination of findings.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eDraper ES, Zeitlin J, Manktelow BN, Piedvache A, Cuttini M, Edstedt Bonamy AK, et al. EPICE cohort: two-year neurodevelopmental outcomes after very preterm birth. Arch Dis Child - Fetal Neonatal Ed. 2020 Jul;105(4):350\u0026ndash;6. \u003c/li\u003e\n\u003cli\u003ePetrou S, Yiu HH, Kwon J. Economic consequences of preterm birth: a systematic review of the recent literature (2009-2017). Arch Dis Child. 2019 May;104(5):456\u0026ndash;65. \u003c/li\u003e\n\u003cli\u003eKotagal UR, Perlstein PH, Gamblian V, Donovan EF, Atherton HD. Description and evaluation of a program for the early discharge of infants from a neonatal intensive care unit. J Pediatr. 1995 Aug 1;127(2):285\u0026ndash;90. \u003c/li\u003e\n\u003cli\u003eBroyles RS, Tyson JE, Heyne ET, Heyne RJ, Hickman JF, Swint M, et al. Comprehensive Follow-up Care and Life-Threatening Illnesses Among High-Risk InfantsA Randomized Controlled Trial. JAMA. 2000 Oct 25;284(16):2070\u0026ndash;6. \u003c/li\u003e\n\u003cli\u003eNICE NI for H and CE. Overview | Developmental follow-up of children and young people born preterm | Guidance | NICE [Internet]. NICE; 2017 [cited 2023 Mar 8]. Available from: https://www.nice.org.uk/guidance/ng72\u003c/li\u003e\n\u003cli\u003eH\u0026uuml;ning BM, H\u0026auml;rtel C. European standards of care for newborn health: Transition from hospital to home. [Internet]. European Foundation for the Care of Newborn Infants; 2022. Available from: https://newborn-health-standards.org/wp-content/uploads/2022/08/2022_09_01_TEG_Follow_up_all.pdf\u003c/li\u003e\n\u003cli\u003ePan American Health Organisation. Evidence-based clinical practice guidelines for the follow-up of at-risk neonates. Abridged version [Internet]. Washington D.C: Pan American Health Organisation; 2021. Available from: https://iris.paho.org/bitstream/handle/10665.2/53245/PAHOFPLCLP200017_eng.pdf?sequence=1\u0026amp;isAllowed=y\u003c/li\u003e\n\u003cli\u003eScottish Perinatal Network. National Neonatal Discharge Planning and Follow-up Framework [Internet]. NHS Scotland; 2019 [cited 2023 Mar 29]. Available from: https://www.perinatalnetwork.scot/wp-content/uploads/2020/01/2019-11-Nat-Neo-Disch-Plan-FU-Framework-v1.0-for-printing.pdf\u003c/li\u003e\n\u003cli\u003eAdams E, Harvey K, Sweeting M. Neonatology GIRFT Programme National Specialty Report [Internet]. 2022 Apr [cited 2023 Mar 8] p. 1\u0026ndash;131. Available from: https://gettingitrightfirsttime.co.uk/medical_specialties/neonatology/\u003c/li\u003e\n\u003cli\u003eBallantyne M, Benzies K, Rosenbaum P, Lodha A. Mothers\u0026rsquo; and health care providers\u0026rsquo; perspectives of the barriers and facilitators to attendance at Canadian neonatal follow-up programs. Child Care Health Dev. 2015 Sep;41(5):722\u0026ndash;33. \u003c/li\u003e\n\u003cli\u003eKomoriyama A, Paize F, Littlefair E, Dewhurst C, Gladstone M. A journey through follow‐up for neurodevelopmentally at‐risk infants\u0026mdash;A qualitative study on views of parents and professionals in Liverpool. Child. 2019 Nov;45(6):808\u0026ndash;14. \u003c/li\u003e\n\u003cli\u003eGreen CE, Tyson JE, Heyne RJ, Hintz SR, Vohr BR, Bann CM, et al. Use of term reference infants in assessing the developmental outcome of extremely preterm infants: lessons learned in a multicenter study. J Perinatol. 2023 Nov;43(11):1398\u0026ndash;405. \u003c/li\u003e\n\u003cli\u003eAnderson PJ, De Luca CR, Hutchinson E, Roberts G, Doyle LW, the Victorian Infant Collaborative Group. Underestimation of Developmental Delay by the New Bayley-III Scale. Arch Pediatr Adolesc Med. 2010 Apr 1;164(4):352\u0026ndash;6. \u003c/li\u003e\n\u003cli\u003eJohnson S, Moore T, Marlow N. Using the Bayley-III to assess neurodevelopmental delay: which cut-off should be used? Pediatr Res. 2014 May;75(5):670\u0026ndash;4. \u003c/li\u003e\n\u003cli\u003eJanvier A, Farlow B, Baardsnes J, Pearce R, Barrington KJ. Measuring and communicating meaningful outcomes in neonatology: A family perspective. Semin Perinatol. 2016 Dec;40(8):571\u0026ndash;7. \u003c/li\u003e\n\u003cli\u003eHintz SR, deRegnier RA, Vohr BR. Outcomes of Preterm Infants: Shifting Focus, Extending the View. Clin Perinatol. 2023 Mar 1;50(1):1\u0026ndash;16. \u003c/li\u003e\n\u003cli\u003eLitt JS, Halfon N, Msall ME, Russ SA, Hintz SR. Ensuring Optimal Outcomes for Preterm Infants after NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up. Children. 2024 Jan 24;11(2):146. \u003c/li\u003e\n\u003cli\u003eJohnson PhD S, Marlow DM FRCPCH N, Wolke PhD Dipl-Psych D, Davidson MD MSc FRCPCH FRCP FFPHM FAAP L, Marston MSc L, O\u0026rsquo;Hare MD FRCP FRCPCH A, et al. Validation of a parent report measure of cognitive development in very preterm infants. Dev Med Child Neurol. 2004;46(6):389\u0026ndash;97. \u003c/li\u003e\n\u003cli\u003ePicotti E, Bechtel N, Latal B, Borradori-Tolsa C, Bickle-Graz M, Grunt S, et al. Performance of the German version of the PARCA-R questionnaire as a developmental screening tool in two-year-old very preterm infants. Bhatt GC, editor. PLOS ONE. 2020 Sep 3;15(9):e0236289. \u003c/li\u003e\n\u003cli\u003eCaesar R, Colditz PB, Cioni G, Boyd RN. Clinical tools used in young infants born very preterm to predict motor and cognitive delay (not cerebral palsy): a systematic review. Dev Med Child Neurol. 2021 Apr;63(4):387\u0026ndash;95. \u003c/li\u003e\n\u003cli\u003eCosta R, Aubert AM, Sepp\u0026auml;nen AV, \u0026Aring;d\u0026eacute;n U, Sarrechia L, Zemlin M, et al. Motor-related health care for 5-year-old children born extremely preterm with movement impairments. Dev Med Child Neurol. 2022;64(9):1131\u0026ndash;44. \u003c/li\u003e\n\u003cli\u003eMcBryde M, Fitzallen GC, Liley HG, Taylor HG, Bora S. Academic Outcomes of School-Aged Children Born Preterm: A Systematic Review and Meta-analysis. JAMA Netw Open. 2020 Apr 3;3(4):e202027. \u003c/li\u003e\n\u003cli\u003eBAPM. The British Association of Perinatal Medicine Service and Quality Standards for Provision of Neonatal Care in the UK [Internet]. British Association of Perinatal Medicine; 2022. Available from: https://hubble-live-assets.s3.amazonaws.com/bapm/file_asset/file/1494/BAPM_Service_Quality_Standards_FINAL.pdf\u003c/li\u003e\n\u003cli\u003eRoyal College of Occupational Therapists. Occupational therapy in neonatal services and early intervention. Practice guideline [Internet]. 2022. Available from: https://www.rcot.co.uk/practice-resources/rcot-publications/downloads/neonatal-services\u003c/li\u003e\n\u003cli\u003eBliss. Filling the gaps: A Spotlight on Allied Health Professional, Psychological and Pharmacy Roles in Neonatal Care [Internet]. BLISS Charity; 2025 Mar [cited 2025 Mar 19] p. 1\u0026ndash;33. Available from: https://sr-bliss.s3.amazonaws.com/documents/Filling-the-gaps_final-1-2.pdf\u003c/li\u003e\n\u003cli\u003eHurt L, Odd D, Mann M, Beetham H, Dorgeat E, Isaac TC, et al. What matters to families about the healthcare of preterm or low birth weight infants: A qualitative evidence synthesis. Patient Educ Couns. 2023 Oct;115:107893. \u003c/li\u003e\n\u003cli\u003eDavis-Strauss SL, Johnson E, Lubbe W. Information and Support Needs of Parents With Premature Infants: An Integrative Review. J Early Interv. 2021 Sep 1;43(3):199\u0026ndash;220. \u003c/li\u003e\n\u003cli\u003eBater ML, Gould JF, Collins CT, Anderson PJ, Stark MJ. Child development education in the Neonatal Unit: Understanding parent developmental literacy needs, priorities and preferences. Patient Educ Couns. 2024 Feb 1;119:108058. \u003c/li\u003e\n\u003cli\u003eAagaard H, Hall ElisabethOC, Audulv \u0026Aring;, Ludvigsen MS, Westergren T, Fegran L. Parents\u0026rsquo; experiences of transitioning to home with a very-low-birthweight infant: A meta-ethnography. J Neonatal Nurs [Internet]. 2022 Dec 9 [cited 2023 Mar 29]; Available from: https://www.sciencedirect.com/science/article/pii/S1355184122002186\u003c/li\u003e\n\u003cli\u003eFortune A, Perkins E, Paize F, Palanisami B, Gladstone M. Managing mothers\u0026rsquo; and fathers\u0026rsquo; uncertainty during their journey through early neurodevelopmental follow-up for their high-risk infants\u0026mdash;A qualitative account. Child Care Health Dev [Internet]. [cited 2023 Dec 14];n/a(n/a). Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/cch.13168\u003c/li\u003e\n\u003cli\u003eLiu M, Woodman J, Grath-Lone LM, Clery A, Bunting C, Bennett S, et al. Local area variation in health visiting contacts across England for children under age 5: a cross-sectional analysis of administrative data in England 2018-2020. Int J Popul Data Sci [Internet]. 2024 May 13 [cited 2025 Mar 4];9(2). Available from: https://ijpds.org/article/view/2382\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Neonatal, Follow-up, Neurodevelopment, Preterm, Premature, Infant, High-risk, ","lastPublishedDoi":"10.21203/rs.3.rs-6464137/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6464137/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTo assess the clinical service provision of neonatal follow-up services in the UK in line with UK National Institute for Health and Care Excellence (NICE) guideline NG72, ‘Developmental follow-up of children and young people born preterm’.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDesign\u003c/strong\u003e: Online survey\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSetting:\u003c/strong\u003eNeonatal units in England, Scotland and Wales (n=187)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipants:\u003c/strong\u003e Lead neonatal clinicians for neurodevelopmental follow-up\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEligible responses were received from 154 neonatal units (82%). This included 52/58 (89%) Neonatal Intensive Care Units, 68/86 (79%) Local Neonatal Units, and 34/43 (79%) Special Care Baby Units. Overall, 136 units (88%) offered neurodevelopmental follow-up for infants born \u0026lt;30 weeks' gestation and 75 (51%) for infants born \u0026lt;32 weeks' gestation. Out of 145 responses, 134 units (92%) offered follow-up to infants with brain injury requiring cooling therapy. The General Movements Assessment was used by 32 units (22%), PARCA-R questionnaire by 52 (35%) and Bayley-III by 80 (55%). A 2-year neurodevelopmental face-to-face appointment was offered to infants born \u0026lt;30 weeks' gestation by 129 units (83%); only ten units (6%) offered a 4-year assessment for infants born \u0026lt;28 weeks' gestation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere is wide variation in the structure and content of neonatal neurodevelopmental follow-up. Greater standardisation of services is needed to reduce inequalities in care and improve family experiences.\u003c/p\u003e","manuscriptTitle":"Neonatal neurodevelopmental follow-up in the UK: a survey of current practice and future recommendations","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-05-07 06:15:26","doi":"10.21203/rs.3.rs-6464137/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-05-21T15:34:48+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-05-20T02:11:59+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-05-01T11:57:35+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"242700866377143985559132570545638212712","date":"2025-04-26T14:12:27+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"102705990691743214495767927951635207222","date":"2025-04-24T13:44:49+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"37701510365543649926624456732863767930","date":"2025-04-24T13:40:42+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-04-24T13:30:42+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-04-24T13:14:41+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-04-24T04:42:45+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-04-23T19:47:21+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pediatrics","date":"2025-04-23T19:46:12+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"1dc221b3-bcad-4a6c-b7b9-165c12ab4985","owner":[],"postedDate":"May 7th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-09-08T15:59:01+00:00","versionOfRecord":{"articleIdentity":"rs-6464137","link":"https://doi.org/10.1186/s12887-025-05960-7","journal":{"identity":"bmc-pediatrics","isVorOnly":false,"title":"BMC Pediatrics"},"publishedOn":"2025-09-01 15:57:06","publishedOnDateReadable":"September 1st, 2025"},"versionCreatedAt":"2025-05-07 06:15:26","video":"","vorDoi":"10.1186/s12887-025-05960-7","vorDoiUrl":"https://doi.org/10.1186/s12887-025-05960-7","workflowStages":[]},"version":"v1","identity":"rs-6464137","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6464137","identity":"rs-6464137","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}