ABSTRACT
Aim
Infants exposed to alcohol and/or drugs (AoD) in utero are at considerable risk for developmental complications which are amenable to early intervention. There are no published guidelines in Australia for the allied health care of infants and toddlers (0–2 years) who have been exposed to AoD in utero. This study aimed to explore the current service delivery and follow‐up health services available across Australia for this high‐risk population group.
Methods
A custom‐designed survey was distributed via email to the leading contact of hospitals based in Australia that offered a neonatal‐based follow‐up service (n = 43). Reminders to prompt completion were emailed out at regular intervals over a two‐month period.
Results
A total of 15 of 43 invited services (35%) provided responses with only 3 of 15 (20%) offering targeted care for infants exposed to AoD and 5 (33%) using any formal developmental or screening tools with this population. Responses indicated inconsistencies with allied health involvement including professions involved and time points for follow‐up care. Funding was highlighted as a key barrier to conducting follow‐up assessments, with 12 of 15 (80%) health services reporting they received no dedicated funding for this population.
Conclusion
Within the responding services, our data reflects the lack of consensus on any standardised process for assessment or follow‐up service delivery for this high‐risk patient population. Although the response rate was low, it is consistent with previous health professional survey research. There remains a need for further research and the development of clinical care guidelines on best standard protocols for assessing and supporting the development of infants exposed to AoD in utero.
Keywords: alcohol and drug exposure, benchmark, follow‐up, neonatology, survey
Key Points
- What is Already Known on This Topic
-
○Infants exposed to alcohol and/or drugs in utero have an increased risk of neurodevelopmental and mental health problems.
-
○Early screening and intervention are important to optimise developmental outcomes for these high‐risk infants.
-
○Currently, there is a lack of literature to guide clinical practice and no standardised clinical care guidelines in Australia related to developmental support and follow‐up.
-
○
- What This Paper Adds
-
○Preliminary insights into the current follow‐up care for infants exposed to alcohol and/or drugs in utero were provided by responding services across Victoria, New South Wales and Queensland.
-
○In Australia, there is a major gap in targeted care, minimal use of developmental screening tools and considerable variation in allied health involvement and follow‐up time‐points.
-
○There is need to develop standardised guidelines to inform the developmental follow‐up care of infants who have been exposed to alcohol and/or drugs across Australia.
-
○
1. Introduction
The growing prevalence of prenatal exposure to alcohol and/or drugs (AoD) is a global public health concern [1]. Worldwide, approximately 9.8% of women consume alcohol during pregnancy [2, 3]. In Australia, 11.3% of pregnant women report consuming over seven standard drinks per week during their pregnancy while up to 4% of Australian pregnant women report using illicit substances [4]. These figures likely underrepresent the problem due to limitations of self‐reporting.
Infants exposed to AoD in utero are at increased risk of neurodevelopmental abnormalities [1]. These children have a greater risk of physical and mental health challenges, learning difficulties and delayed development [5] and there is growing evidence that there is a need for developmental monitoring in this population [6, 7]. These vulnerabilities may be further compounded by complex family and social backgrounds, including parental mental health, neurodevelopmental and substance use difficulties, which further increases the developmental risk for infants exposed to AoD [8, 9].
During infancy, there is a high degree of neuroplasticity which provides an important window to reduce these risks and improve outcomes through early screening and intervention [10]. While data are limited specifically for infants with AoD exposure, other infant populations at increased risk of developmental delay (e.g., preterm infants) can benefit from early intervention to improve early cognitive and motor function [11]. Furthermore, a previous randomised controlled trial of early intervention among preterm infants showed more benefit where families had higher social risk [12].
Despite the clear need for early intervention, defined outcomes and standardised assessment tools for infants exposed to AoD (specifically for the 0–2 years age range) are lacking [13]. Additionally, preliminary research highlights that allied health professionals play a key role in early evaluation of motor and language development and ongoing follow‐up of these high‐risk infants [14]. However, there is a lack of published guidelines for allied health involvement in this underserviced population.
This current study aims to understand the current developmental assessment and follow‐up care of infants exposed to AoD in utero across neonatal services in Australia, and the role of allied health.
2. Methods
2.1. Research Team and Survey Development
The research team (including Doctor of Physiotherapy students, physiotherapists, doctoral researchers, a clinician scientist and a consultant neonatologist) developed questions relating to the developmental care of infants and toddlers (0–2 years corrected age) exposed to AoD in utero. Questions were trialled and refined in consultation with the consultant neonatologist, with the final questions approved by the entire research team.
We used Qualtrics to formulate the final survey questions which included a mix of quantitative (tick‐box, Likert scale responses) and qualitative (open‐ended) questions.
2.2. Survey Content
The survey included questions related to follow‐up services for infants exposed to AoD in utero—screening/assessment tools used, health professionals involved, importance of allied health, allied health referral pathways and time‐points/age for follow up. Additionally, participants were asked about funding of follow‐up services, current barriers to providing high‐quality care and assessments that could improve developmental follow‐up for this population (File S1).
2.3. Participant Identification and Recruitment
We created a list of key health services from the Australian and New Zealand Neonatal Network (ANZNN) 2022 report [15] which lists 25 Level 3 neonatal intensive care units and 18 Level 2 special care nurseries across all states and territories in Australia. These services require a follow‐up programme to be included in the ANZNN. The final 16‐question survey was sent via email to the key contact listed for the 43 services within the report. Where key contacts were outdated or missing, hospitals were contacted directly via phone to request updated contact details.
2.4. Survey Distribution and Follow‐Up Procedures
The online survey included the option for phone call follow‐up if a verbal response was preferred. Reminder emails were sent as required followed by a final follow up phone call to increase survey response rate. Where there was no response to email and phone call, follow up emails and phone calls were made to request the survey be passed on to another appropriate contact/team member.
2.5. Data Collection and Analysis
Data collection occurred in August and September 2025. Data were de‐identified during analysis and publication of findings. Human research ethics committee approval from the University of Melbourne was granted prior to commencing the study (UoM 2025‐33298). Quantitative data were analysed in Microsoft Excel (Microsoft Corporation, Redmond, Washington) using descriptive statistics (means, medians, count, percentages) and presented in tables and graphs. Open‐text data were analysed using descriptive content analysis to summarise patterns and frequencies in responses.
3. Results
Of the 43 hospitals invited to participate in the survey, 15 responses were received from hospitals based in Victoria, New South Wales and Queensland. No responses were received from those contacted in the Australian Capital Territory, Northern Territory, South Australia, Tasmania and Western Australia. Survey respondents identified themselves as doctors (n = 12), as well as a director, psychologist and health administrator. Figure 1 presents the services that were involved in follow‐up appointments from survey respondents. After doctors, social workers were the second most common service routinely involved in follow‐up appointments (Figure 1).
FIGURE 1.
Services routinely involved in follow‐up appointments.
3.1. Overview of Clinical Care Structure
Outlined in Figure 2, only 20% (n = 3) selected targeted/specific care as the type of care infants exposed to AoD in utero received. One health service selected ‘other’, noting ‘usually a part of other complex medical or surgical conditions, not in isolation’.
FIGURE 2.
Number of hospitals offering targeted, routine, or other types of care for infants exposed to AoD in utero (n = 15).
3.1.1. Time Points for Follow‐Up Care
Among those who provided defined time points (n = 3, 20%), follow‐up commonly occurred at 3 to 4‐month intervals, particularly within the first year of life. Some services described more structured follow‐up time points, for example, reviews at 6 weeks, 3 months, 6 months, 9 or 12 months (depending on concerns), 18 months, then every 6 months until 5 years of age.
In approximately half of cases (n = 7, 46%), no specific time points for follow‐up care were reported with follow ups arranged ‘as needed’. Factors which influence the time point of follow‐up include clinical indicators and logistics around clinic availability. Infants requiring pharmacological management tended to receive follow‐up care sooner and more frequently.
The remaining respondents (n = 5, 33%) stated they do not routinely follow up this population, with one health service stating this is due to a lack of resources.
3.1.1.1. Allied Health Referrals
Allied health refers to occupational therapy, physiotherapy and speech pathology. The most frequently cited approach to determining need for referral was based on clinical indicators such as support for feeding, movement or neurological issues during inpatient care or medical follow‐up in outpatient clinics. These assessments are typically conducted by medical or nursing staff. For some services, referrals are based on risk factors such as: Severity of withdrawal (e.g., requiring morphine), prolonged withdrawal periods, abnormal imaging or clinical findings (e.g., microcephaly). In outpatient settings, allied health involvement is often ‘as needed’ based on medical assessments and concerns raised during follow‐up.
3.1.1.2. Pathway for Allied Health Referral
It was most reported that referrals to allied health were managed internally via electronic referral through channels such as EMR and email, with most referrals generated via the clinical team (medical and nursing staff).
Other methods of referrals used included paper‐based referrals, and one response stated referrals occurred via in‐person discussions.
3.1.1.3. Use of Developmental Assessment Tools
Only one response mentioned use of a formal developmental assessment tool (Bayley Scales of Infant and Toddler development (BSID), version 4) [16].
3.1.2. Emerging Models
One service noted implementation of inpatient neurodevelopmental and behavioural assessments by neonatal occupational therapists, reflecting an effort to build more proactive, structured referral pathways.
3.1.2.1. Self‐Rated Importance of Allied Health Involvement
Outlined in Figure 3, survey respondents were asked to rate the level of importance of allied health involvement in their health service for this population. The median score was 75 [range: 0–100].
FIGURE 3.
Reported rating of importance of allied health involvement in care of infants exposed to AoD in utero (n = 15).
3.2. Assessments
Participants could select more than one assessment in the tick‐box style question, percentages reflect the number of hospitals reporting each assessment. Of the 15 health services which responded, weight check, developmental screening, length check and welfare check were most frequently reported to occur during routine check‐up with infants exposed to AoD. BMI, formal developmental assessment and cognition were least frequently reported to occur during a routine check‐up (Figure 4). One health service did not select any assessments/screens, as infants exposed to AoD received standard newborn follow‐up only.
FIGURE 4.
What occurs during a routine check‐up for infants exposed to AoD in utero (n = 15).
Most health services did not use developmental screening or assessment tools for infants exposed to AoD (Figure 5). Out of the health services that use developmental screening or assessment tools (33%, n = 5).
FIGURE 5.
Number of hospitals that use developmental screening or assessment tools for infants exposed to AoD in utero (n = 15). ‘Yes’ indicates hospitals that reported using screening or assessment tools; ‘No’ indicates hospitals that do not use any tools.
When asked hypothetically about which tools could help provide high‐quality follow‐up care to infants exposed to AoD in utero, most suggested the BSID [16] (Figure 6). Some health services responded more broadly, suggesting the following could help provide high‐quality follow‐up care: medical, behavioural, audiology, infant mental health and developmental assessments, as well as dedicated follow‐up with the multidisciplinary team (MDT). Six health services did not respond to the question.
FIGURE 6.
Developmental screening or assessment tools that if implemented could help to provide high‐quality follow‐up care to infants exposed to AoD (n = 9 of 15 services that responded to this question; six services did not respond.). BSID, Bayley Scales of Infant and Toddler Development; ASQ, Ages and Stages Questionnaire; FNASS/m‐FNASS, Finnegan Neonatal Abstinence Score (modified); GMA, General Movement Assessment.
3.3. Barriers
The data represented in Figure 7A, was collected via a tick‐box style question in which participants could select more than one barrier; percentages reflect the number of hospitals reporting each assessment. As outlined in Figure 7A, out of the 15 health services that responded, funding was the most frequently reported barrier to the provision of high‐quality follow‐up care of infants exposed to AoD (80%, n = 12). This closely aligned with the data presented in Figure 7B, in which, of the 15 health services, the majority (80%, n = 12) reported they received no dedicated funding for follow‐up care or services for this population.
FIGURE 7.
Resource allocation. (A) Reported Barriers within health service to providing high‐quality follow‐up to infants exposed to AoD (n = 15). (B) Reported sources of funding for the care of infants exposed to AoD (n = 15).
As shown in Figure 7A, many health services also reported staffing to be a barrier to the provision of high‐quality follow‐up (73%, n = 11). Space availability, family disengagement and identification of infants were also barriers to the provision of high‐quality follow‐up.
4. Discussion
This study found that most responding services provide care for infants exposed to AoD as part of routine neonatal care rather than through targeted programmes. Two thirds of respondents did not use formal developmental screening or assessment tools for this population. Considerable variation was identified in allied health involvement, referral pathways and follow‐up time points. Funding was the most frequently reported barrier to high‐quality follow‐up care. Early screening and intervention are important for optimising development and improving long term outcomes in infants exposed to AoD in utero [17]. Accordingly, the absence of standardised follow‐up pathways and limited use of formal developmental screening tools found in this study is concerning.
Developmental screening was the second most frequently reported check‐up practice but most did not use a formal developmental screening. This suggests that ‘developmental screening’ may occur informally or through clinician observation rather than via validated tools. This is concerning given the increased risk of neurodevelopmental abnormalities among AoD‐exposed infants [17]. Specifically for infants at risk of FASD, it is recommended that they are assessed by a multidisciplinary team, including allied health [18, 19]. Where a child has existing developmental vulnerability (e.g., AoD exposure), unstructured and varied developmental screening is not sufficient to monitor this population. While most infants would be monitored through state‐based child and family maternal health nurse checks and could be referred to allied health, the specific vulnerabilities of infants exposed to AoD in utero necessitate a higher level of monitoring.
In health services that used developmental screening and/or assessment tools, a variability existed, reflecting the absence of clear guidance regarding best practice for this population. Furthermore, several commonly used tools including the ASQ and Brigance have not been validated in this high‐risk population. These tools rely on parent‐report and disrupted caregiving is common among infants exposed to AoD in utero. Infants may be excluded from access to validated screening because of their reliance on parent‐report. This highlights the need for reliability and validity studies to ensure appropriate and accurate application of these tools in infants exposed to AoD in utero.
Our results suggested that although allied health involvement is currently minimal, many respondents recognised its potential value. This disconnect may reflect resource and funding constraints rather than a lack of recognition of allied health's role. Additionally, referrals to allied health were often made on an ‘as needed’ basis, rather than embedded within structured care pathways with structured follow‐up schedules. This reactive approach may delay access to early intervention services and contribute to missed opportunities for timely support.
Funding and resourcing were the most frequently reported barriers to providing high‐quality follow‐up care for these high‐risk infants. These findings are consistent with existing literature highlighting resource scarcity, competing clinical demands and workforce capacity as major challenges in delivering consistent developmental follow‐up services [20, 21].
Our survey provides novel insight into developmental follow‐up services of infants exposed to AoD in utero which is an important first step towards developing standardised care guidelines for this highly vulnerable population. A key strength of our study is its scope—hospitals across Australia (identified through the ANZNN 2022 report) were invited to participate. The online survey approach was concise (15–20 min to complete) and enabled rapid, low‐cost data collection from different Australian hospitals.
Our study results should be considered within limitations. First, the survey response rate was low at 35% (15 out of 43 invited hospitals) representing only Victoria, New South Wales and Queensland despite extensive follow‐up strategies used to maximise responses. However, this is in keeping with response rates from previous health professional survey research [22]. Accordingly, lack of data from services in the Australian Capital Territory, South Australia, Tasmania, Northern Territory and Western Australia limits our ability to generalise findings nationally. In particular, the Northern Territory has the highest rates of drug and alcohol use [23] and developmental risk screening and follow‐up may differ in this jurisdiction. Accordingly, findings should not be interpreted as representative of national practice. Additionally, most respondents were doctors, and we acknowledge that we did not have clarity on whether respondents answered individually versus on behalf of their organisation, despite encouragement to discuss responses with their team within the recruitment email. Therefore, responses related to self‐rated importance of allied health involvement has limited generalisability.
It is possible that services with more established AoD follow‐up programmes, or those with greater research engagement, were more motivated to respond. This may have introduced selection bias, whereby the findings overestimate the availability of structured follow‐up care relative to the broader national picture. Additionally, we did not invite services without an SCN or NICU to respond to the survey due to resource and scope limitation. We selected SCN or NICU services as ANZNN membership requires an existing follow‐up programme, which shaped our questionnaire design. Whilst our study design provided opportunity to clarify with services where responses were difficult to interpret (most services consented to be contacted should their responses need clarification), this was not feasible due to time and resource limitations.
This study emphasises the urgent need to develop standardised developmental care guidelines for infants exposed to AoD in utero. Further research could explore the effectiveness of the targeted follow‐up services currently in place to identify which models of care optimise developmental outcomes. To ensure family‐centred care models, this research should involve direction and learnings from family and child experiences of the services. It is recommended that future research consider evaluating the implementation and clinical utility of standardised developmental screening tools for this high‐risk cohort.
Our study is the first Australian benchmarking survey investigating current follow‐up services for this cohort. Whilst our research is not without limitations, it highlights there is a major lack of targeted services and inconsistencies in allied health involvement for this population. Within the responding services, these findings reflect the need for further investment in funding and research to inform national practice. Considerable knowledge gaps persist regarding best‐practice service delivery models and evidence‐based developmental monitoring approaches for this population. Future development of standardised follow‐up guidelines and care pathways would promote early recognition and management of neurodevelopmental concerns to optimise outcomes for this high‐risk population. The findings from this study provide a benchmark from which further research and standardised follow‐up guidelines can be developed.
Funding
The authors have nothing to report.
Ethics Statement
The study was approved by the Human Research Ethics Committee from the University of Melbourne (2025‐33298‐69020‐3).
Conflicts of Interest
The authors declare no conflicts of interest.
Supporting information
File S1: Survey.
Acknowledgements
The authors would like to thank those who participated in our survey and shared their knowledge and experiences. We would also like to acknowledge the Royal Women's Hospital, the University of Melbourne and all investigators and team mentors for their important contributions to this research. Open access publishing facilitated by The University of Melbourne, as part of the Wiley ‐ The University of Melbourne agreement via the Council of Australasian University Librarians.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
References
- 1. Lowe J. R., DiDomenico J., Stephen J. M., Roberts M. H., Rodriguez D. E., and Bakhireva L. N., “Early Developmental Trajectory of Children With Prenatal Alcohol and Opioid Exposure,” Pediatric Research 96, no. 2 (2024): 471–479. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2. Popova S., Lange S., Probst C., Gmel G., and Rehm J., “Estimation of National, Regional, and Global Prevalence of Alcohol Use During Pregnancy and Fetal Alcohol Syndrome: A Systematic Review and Meta‐Analysis,” Lancet Global Health 5, no. 3 (2017): e290–e299. [DOI] [PubMed] [Google Scholar]
- 3. Tavella R. A., Dea V., Muccillo‐Baisch A. L., and Dasj F., “Prevalence of Illicit Drug Use During Pregnancy: A Global Perspective,” Anais da Academia Brasileira de Ciências 92, no. 4 (2020): e20200302. [DOI] [PubMed] [Google Scholar]
- 4. Australian Institute of Health and Welfare , “National Drug Strategy Household Survey 2022–2023,” 2025, Canberra, Australia.
- 5. Peterson‐Katz K., Piccone C., Tuzi N., Kulkarni C., and Reynolds J. N., “Barriers and Facilitators to Implementation of Developmental Screening and Early Intervention in Canadian Organizations Following Completion of a Training and Coaching Model: A Thematic Analysis,” Frontiers in Health Services 3 (2023): 1160217. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6. Yeoh S. L., Eastwood J., Wright I. M., et al., “Cognitive and Motor Outcomes of Children With Prenatal Opioid Exposure: A Systematic Review and Meta‐Analysis,” JAMA Network Open 2, no. 7 (2019): e197025. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7. Arter S. J., Tyler B., McAllister J., Kiel E., Guler A., and Cameron Hay M., “Longitudinal Outcomes of Children Exposed to Opioids in‐Utero: A Systematic Review,” Journal of Nursing Scholarship 53, no. 1 (2021): 55–64. [DOI] [PubMed] [Google Scholar]
- 8. Uher R., Pavlova B., Radua J., et al., “Transdiagnostic Risk of Mental Disorders in Offspring of Affected Parents: A Meta‐Analysis of Family High‐Risk and Registry Studies,” World Psychiatry 22, no. 3 (2023): 433–448. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9. Barfield W. D., “Social Disadvantage and Its Effect on Maternal and Newborn Health,” Seminars in Perinatology 45, no. 4 (2021): 151407. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10. Luby J. L., Herzberg M. P., Hoyniak C., et al., “Basic Environmental Supports for Positive Brain and Cognitive Development in the First Year of Life,” JAMA Pediatrics 178, no. 5 (2024): 465–472. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. Orton J., Doyle L. W., Tripathi T., Boyd R., Anderson P. J., and Spittle A. J., “Early Developmental Intervention Programs Post Hospital Discharge to Prevent Motor and Cognitive Impairments in Preterm Infants,” Cochrane Database of Systematic Reviews 2 (2024): CD005495. [DOI] [PubMed] [Google Scholar]
- 12. Spittle A. J., Treyvaud K., Lee K. J., Anderson P. J., and Doyle L. W., “The Role of Social Risk in an Early Preventative Care Programme for Infants Born Very Preterm: A Randomized Controlled Trial,” Developmental Medicine and Child Neurology 60, no. 1 (2018): 54–62. [DOI] [PubMed] [Google Scholar]
- 13. Spittle A. J., Anderson P. J., Tapawan S. J., Doyle L. W., and Cheong J. L. Y., “Early Developmental Screening and Intervention for High‐Risk Neonates ‐ From Research to Clinical Benefits,” Seminars in Fetal & Neonatal Medicine 26, no. 3 (2021): 101203. [DOI] [PubMed] [Google Scholar]
- 14. Oei J. L., “Improving Neurological and Mental Health Outcomes for Children With Prenatal Drug Exposure,” Seminars in Fetal & Neonatal Medicine 29, no. 4–5 (2024): 101557. [DOI] [PubMed] [Google Scholar]
- 15. Chow S. S. W., Creighton P., Holberton J. R., Chambers G. M., and Lui K., “Report of the Australian and New Zealand Neonatal Network 2022,” 2024, Sydney.
- 16. Bayley N. and Aylward G. P., Bayley Scales of Infant and Toddler Development Fourth Edition (Bayley‐4) Australian and New Zealand Standardised (Pearson, 2020). [Google Scholar]
- 17. Ross E. J., Graham D. L., Money K. M., and Stanwood G. D., “Developmental Consequences of Fetal Exposure to Drugs: What We Know and What We Still Must Learn,” Neuropsychopharmacology 40, no. 1 (2015): 61–87. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18. Bower C., Elliott E. J., Zimmet M., et al., “Australian Guide to the Diagnosis of Foetal Alcohol Spectrum Disorder: A Summary,” Journal of Paediatrics and Child Health 53, no. 10 (2017): 1021–1023. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19. Mueller T., Evavold D., Kim J.‐Y., Klug M. G., and Burd L., “Is a Mini‐Screen for Fetal Alcohol Spectrum Disorder Feasible?,” Open Journal of Pediatrics 14, no. 4 (2024): 767–781. [Google Scholar]
- 20. Pote I., Doubell L., Brims L., Larbie J., Stock L., and Lewing B., “Engaging Disadvantaged and Vulnerable Parents: An Evidence Review,” 2019.
- 21. Sivertsen N., Anikeeva O., Deverix J., and Grant J., “Aboriginal and Torres Strait Islander Family Access to Continuity of Health Care Services in the First 1000 Days of Life: A Systematic Review of the Literature,” BMC Health Services Research 20, no. 1 (2020): 829. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22. Bonevski B., Magin P., Horton G., Foster M., and Girgis A., “Response Rates in GP Surveys ‐ Trialling Two Recruitment Strategies,” Australian Family Physician 40, no. 6 (2011): 427–430. [PubMed] [Google Scholar]
- 23. Australian Institute of Health and Welfare , Alcohol, Tobacco & Other Drugs in Australia: State and Territory Data (AIHW, 2026). [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
File S1: Survey.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.