“OF ALL substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus” (Stratton, Howe, & Battaglia, 1996, p. 35).
Prenatal alcohol exposure can result in both physical and neurobehavioral disorders, including cognitive, social, language, and motor deficiencies that can persist throughout life (Coles et al., 1997; Day et al., 2002; Day & Richardson, 2004; Eustace, Kang, & Coombs, 2003; Jacobson & Jacobson, 1999; Maier & West, 2001; Streissguth & O'Malley, 2000). Collectively, these problems are known as fetal alcohol spectrum disorders (FASD), a constellation of effects that includes fetal alcohol syndrome (FAS), partial FAS (pFAS), alcohol-related neurodevelopmental disorder, and alcohol-related birth defects, as described by the Institute of Medicine (Stratton et al., 1996). Research also suggests that early identification of an FASD, subsequent interventions, and living in a stable environment are protective factors for increased positive outcomes for children and their families (Streissguth et al., 2004; Streissguth, Barr, Kogan, & Bookstein, 1996). This article describes the innovative Project Fetal Alcohol Screening for Today (FAST), which tested the feasibility of implementing a FASD risk-screening tool in early intervention (EI) settings. Project evaluation focused on implementation of the screening protocol and the feasibility of systems change; further work on the validation of the Project FAST FASD Risk Screening Tool is suggested.
The key component of the causal pathway underlying FASD is prenatal alcohol exposure; thus, prevention efforts focus largely on alcohol consumption among pregnant women and women of child-bearing age. Recently, FAS prevalence among Alaska Native populations declined 49% after 10 years of intensive prevention efforts (Schoellhorn, 2010). Notwithstanding this success, continuing work in this arena is needed. National rates of binge/heavy drinking are estimated to be 2% for pregnant women and 13% for women of childbearing age (Tsai, Floyd, Green, & Boyle, 2007); the number of pregnant women who drank alcohol between the years 2002 and 2007 is fairly static (Substance Abuse and Mental Health Services Administration [SAMHSA], 2008). FASD prevalence is estimated to be at least 10 per 1000 live births, or roughly 40 000 newborns per year (May & Gossage, 2001); a recent study suggests that prevalence in the Western world may be closer to 35 per 1000 births (May et al., 2006). States with higher drinking rates have increased likelihood of alcohol-exposed pregnancies (Centers for Disease Control and Prevention [CDC], 2004; Nelson, Naimi, Brewer, Bolen, & Wells, 2004; SAMHSA, 2008). While prevention of FASD remains a priority, diagnosis and treatment of FASD lag behind the rest of the field. Although FASD has a higher prevalence rate than autism or Down syndrome (Substance Abuse and Mental Health Services Administration, Fetal Alcohol Spectrum Disorders Center for Excellence [SAMHSA FASD], 2004), it is a “hidden” disability and rarely diagnosed. Diagnostic signs are subtle, and the presenting neurobehavioral signs are nonspecific to alcohol exposure.
The utility of a diagnosis is often questioned by clinicians, although families of children with an FASD expressrelief when they finally receive answers to their questions: Why aren't their children making friends, workingto their best ability, or struggling with the basics of daily life? Early diagnosis is associated with improvedoutcomes (Streissguth et al., 2004) and helps professionals tailor interventions to the cognitive abilities of theindividual. Diagnosis suggests FASD assessments for siblings: in one study, among the older 135 siblings of childrenwith FAS, 23 had FAS (Abel, 1988). Parents of disabled children appear to be less psychologicallydistressed when they know the etiology of a disorder rather than continuing to worry and speculate. Finally, FASD-informed interventions contribute to suicide prevention (Astley et al., 2005). While 3% of the general USadult population and 8% of persons with intellectual disabilities have attempted suicide at some time, 22% of persons with FASD have attempted suicide (Dubovsky & Whitney, 2010), mostly because of theirdifficulty in “fitting into” the mainstream of life and lack of FASD-informed interventions. Theconsequences of untreated, unrecognized FASD can reach into adolescence and adulthood. For example, prevalence ratesin youth remanded for inpatient assessment in a juvenile justice system have been estimated at 23.3% (Fast, Conry, & Loock, 1999). In order for children to benefit from interventions, they must be identified, preferablybefore they enter the public school system (Kable, Coles, & Taddeo, 2007; Olson, 2007; O'Connor et al., 2006).
Recent studies suggest that interventions for children with an FASD can improve both learning and behavior using simple, low-cost strategies (Bertrand, 2009; Coles et al., 1997; Frankel, Paley, Marquardt, & O'Connor, 2006; Kable et al., 2007; O'Connor et al., 2006; Olson, 2007; Paley & O'Connor, 2009). While children with an FASD may have co-occurring learning disorders and problems with social skills, interventions for these other disorders may not be successful for FASD.
There are a growing number of FASD clinics across the country where medical and social service teams work with families to obtain a diagnosis, but, in their stead, pediatricians typically refer children to a dysmorphologist, geneticist, or developmental pediatrician for assessment of a range of domains (Paley, 2009).
Screening is the process of determining whether risk is present and further assessment isindicated (Squires & Bricker, 2007), and is used effectively in a range of health arenas such as substance use(Morse & Hutchins, 2000; Kennedy, Finkelstein, Hutchins,& Mahoney, 2004; NIAAA, 2005; Floyd, O'Connor, Bertrand, & Sokol, 2006), FASD (Bertrand et al., 2004; SAMHSA FASD, 2007; Coles, Kable, Drews-Botsch, & Falek, 2000; Barr, & Steissguth, 2001; Streissguth, Bookstein, Barr, Press, & Sampson, 1998), for car seats at neonatal discharge, maternaldepression, genetic metabolic disorders, newborn hearing, iron deficiency anemia, and lead screening. Early childhooddevelopmental screening and intervention have been shown to positively affect academic and social outcomes, providesignificant economic benefits (American Academy of Pediatrics [AAP], 2001; Bailey, Skinner, & Warren, 2005; Hix-Small, Marks, Squires, & Nickel, 2007; Meisels & Shonkoff, 2000; Pinto-Martin, Dunkle, Earls, Fliedner, & Landes, 2005), and are considered to be an essentialcomponent of children's care (Bricker, Squires, & Clifford, 2010). Although routine developmental screeningis recommended by the Academy of Pediatricians (AAP, 2001), actual screening rates in pediatric primary care arefrequently low because of stated barriers of time, reimbursement, and staff issues (CDC, 2005; Council on Children With Disabilities, 2006; Pinto-Martin et al., 2005; Sand et al., 2005).
RATIONALE FOR SELECTING EARLY INTERVENTION
Studies indicate that EI programs have positively influenced developmental trajectories of children served(Meisels & Shonkoff, 2000), especially for children with diverse genetic and developmental delays, and adversesocial environments. The project targeted EI programs since they work with children already known to be at somedevelopmental risk, increasing the likelihood of identification while reducing the burden of screening all pediatricpatients. Federal regulations such as the Child Abuse Prevention and Treatment Act mandate referrals ofsubstance-exposed newborns from Child Welfare to EI (“Keeping Children,” 2003). EI programs would thusbenefit from increased awareness of FASD and the impact that prenatal substance use can have on child development, and from a better understanding about interventions designed specifically for FASD and the complicating factors ofpostnatal environmental risk (Figure 1). Olson, Jirikowic, Kartin, and Astley (2007) have presented a thorough description ofthe impact of FASD and recommended screening for FASD in EI, highlighting that the “growing knowledge about theplasticity of the Central Nervous System (CNS) … strongly [implies] that early identification andintervention for children who are alcohol-exposed may be especially important, because CNS function might potentiallybe improved” (p. 175). To that end, much of the current research on FASD interventions such as adaptivestrategies, behavior, friendship, and mathematics skills focus on children aged 3 to 9 years (Kable et al., 2007;Frankel et al., 2006; Olson, Oti, Gelo, & Beck, 2009; O'Connor et al., 2006), further underscoring theimportance of identification of FASD risk in EI.
PROJECT BACKGROUND, GOALS, AND STRATEGIES
The Institute for Health and Recovery, a statewide service, research, policy, and program development agency, was the lead agency for designing, implementing, and overseeing Project FAST. The project brought together key members of delivery systems that serve children at risk for FASD with the overarching goals of developing and implementing a screening tool for children (birth to 3 years) in select EI sites and developing local linkages.
The specific strategies used to implement this model included (1) establishing a task force; (2) designing a screening instrument; (3) recruiting EI programs; (4) training identified EI programs in screening protocols, diagnostic resources, and FASD-informed interventions; (5) developing linkages for referrals; and (6) evaluating program implementation and results through an independent evaluator at Brandeis University. Each strategy is discussed later.
Establish task force
Staff of Project FAST convened a task force of families of children with an FASD and professionals in medicine, EI, alcohol disorder treatment, child welfare, mental health, and public health. The task force developed screening protocols and identified linkage resources. Each meeting included a presentation related to FASD and an update from the evaluation team about progress to date. Meetings provided an opportunity to increase knowledge, solicit buy-in from participating EI staff, and resolve implementation issues as they arose.
Design screening instrument
As there was no standard FASD screening tool for children (birth to 3 years), a subcommittee of task force members was convened to design one. This group included a clinical geneticist, pediatrician, pediatric psychiatrist, and developmental psychologist with expertise in FASD. The goal was a tool that captured FASD risk factors yet would be compatible with existing EI protocols and routine pediatric assessments to increase the likelihood of protocol adoption. The task force also recognized the time constraints of EI and designed the screening tool to be as quick as possible to administer.
“Dissemination of Innovation” literature, which describes characteristics of innovations that are most likely to be adopted, suggests that the easier protocols are to implement, the more likely they will be adopted (Berwick, 2004; Gladwin, Dixon, & Wilson, 2003). The final screening tool included 3 physical and 3 behavioral risk factors that were quick to assess and were consistent with an alcohol-related disability. The initial and crucial screening marker was “Prenatal Alcohol Exposure,” asked of the birth mother, or collateral records if she was not available. Small head circumference (<10th percentile) has been a part of the diagnostic criteria for FAS since it was first identified in the 1970s (Rosett, 1980). As it can also be a marker for other brain disorders and poor neurological development, head circumference is routinely measured as part of well-baby pediatric care until age 2. A smooth philtrum can also be a marker for FASD (Landgren et al., 2010; Miller et al., 2006).
To these were added 3 behavioral factors (sleeping, eating, and ability to soothe) commonly reported in FASD literature (Stratton et al., 1996). At least 1 physical factor and 1 behavioral factor were considered a “positive” screen, triggering a referral for further assessment and diagnosis. EI site directors and stakeholders provided input on the tool to ensure its practicality for implementation. Project FAST proposed embedding the screening tool into existing EI intakes for universal and routine implementation (Table 1).
Select and recruit EI sites
Three EI programs in racially, geographically, and economically diverse areas, and recommended by the Massachusetts Department of Public Health for their history of embracing innovation, were recruited to participate. Key to site buy-in was a commitment to adapt the goals and objectives of the project to those of the participating EI sites. Accordingly, each EI site director was an active member of the task force, and site-specific implementation strategies were discussed and planned with stakeholder input.
Provide training and educational resources
Training increases commitment to innovative protocols by improving the knowledge and comfort level of participants. Training can also address how the protocol will impact frontline staff tasks (Savitz & Kaluzny, 2000). Project staff, including a developmental psychologist and an alcohol-screening specialist, conducted 1-2 hour trainings on alcohol use in pregnancy, taking an alcohol history, FASD risk factors, the benefits of diagnosis, and talking to parents of children with an FASD. Disposable paper tape measures were provided with directions on taking accurate head circumference measurements, including a table of age- and gender-specific tenth percentile head circumference measurements. Lip-Philtrum Guides (Astley, 2004) were provided with permission of the University of Washington (Figure 2). Training evaluations were completed at the end of each training session. Sites were granted the flexibility to assign screening roles that would best suit their particular agency.
Project staff developed educational materials that were 1-page charts, which described sleeping, eating, and sensory issues; developmental delays that often exist in children and adults with an FASD; and specific strategies to help under each category.
Develop referral linkages
Children with positive FASD screens required further medical assessment, and a statewide directory was compiled of diagnostic specialists who had experience with FASD. Two large health systems in geographic proximity to participating EI sites received training on FASD diagnosis and current research to facilitate referrals from EI to pediatricians to diagnosticians. Project staff introduced a local FASD diagnostician to 2 EI programs to increase the sense of a “warm hand-off” for the referral and diagnostic processes.
Alcohol use disorder outpatient programs were identified for referrals for birth mothers of children with FASD risk factors. In addition, FASD training and referral resources were provided to local residential alcohol use disorder treatment programs for pregnant and postpartum women, some of whom received services from participating EI programs.
Once training was complete and linkages were in place, screening was implemented. On-site technical assistance was regularly offered to motivate programs, facilitate data collection, and maintain fidelity to screening protocols. Telephone and e-mail contact was always available.
The screening tool was embedded in a 1-page document designed to track client FASD risk factors, age, family status, and race/ethnicity, as well as key provider actions such as patient referrals and treatment plans. The results of the complete EI assessment, which would certainly have provided a fuller context for the FASD risk screening, were not available to Project FAST because of confidentiality and internal review board requirements. Sites submitted monthly data; reminder calls facilitated this process. Process methods included key informant interviews, training attendance and evaluations, and EI staff exit interviews. Project protocols were approved by the Brandeis University institutional review board and the Massachusetts Department of Public Health.
As a result of Project FAST, 1161 children in 3 diverse EI programs were screened for FASD Risk. On the basis of these data, Project FAST determined that it was feasible to screen children with developmental delays for FASD risk in EI settings, but specific challenges need to be addressed in order to ensure success (Table 2).
Of those 1161 children, 2% (N = 19) displayed at least one of the physical risk factors and one of the behavioral risk factors from the FASD Screening Tool and were referred for further assessment. At the time of project ending prematurely, after less than 18 months of implementation, one child had been diagnosed with FAS. Although these numbers are lower than those extrapolated from population estimates, exit interviews indicated that protocol fidelity was the issue rather than the composition of the tool itself. As there have not been any epidemiological studies of FASD risk/prevalence in EI settings, these results bear interest (Table 3).
While 93% of children screened were in the custody of the birth mother, only 37% of children who screened positive for risk were in care of their birth mother, consistent with the literature (SAMHSA FASD, 2009b; Table 4).
The project screening tool was developed to be easily implemented by any EI or public health professional and was well-received by the participating EI sites. Exit interviews indicate that EI professionals found the project to be helpful, especially in (1) raising awareness of FASD and (2) identifying children at risk of FASD. However, implementing the screening tool was not without challenges. These will each be addressed.
Screening roles and head circumference
Allowing sites to tailor their approach was intended to increase the likelihood of site buy-in and use of thescreening tool (Meyers, Sivakumar, & Nakata, 1999). Sites were given flexibility in who would be responsible forgathering the data and assessing risk. However, this flexibility appeared to compromise fidelity to the screeningprotocol: in programs where several staff completed the screening, the screens were more likely to be incomplete. Forexample, although the screening data report only 7 children screening positive for microcephaly, acomparative review of the screening data revealed that staff at one site measured small head circumferences butfailed to mark it as “small” on the form. Exit interviews revealed that some staff members thought thatit was their responsibility only to measure head circumference, and not to determine whether thatmeasurement was small or not, mistakenly thinking that the next staff member would complete that step. This resultedin fewer “at-risk” children being referred for FASD assessment than would have been predicted from theactual measurements. When this issue was identified, on-site technical assistance was sufficient to improve protocolfidelity. Replication efforts would therefore benefit from using a single staff person to complete the FASDscreen.
Maternal alcohol histories: Stigma and cultural sensitivity
Innovations typically encounter resistance (Vago, 1999). While maternal alcohol screening in EI can inform achild's potential FASD diagnosis and contribute to preventing future alcohol-exposed pregnancies, EI intakeprotocols seldom include questions about maternal alcohol use. Some staff expressed discomfort in asking a motherabout her prenatal alcohol use, reporting fear of stigmatizing or blaming the mother, causing thefamily to discontinue services, or the belief that mothers would not answer honestly. Other staff members expressedfrustration that alcohol and drug screening was not a routine part of EI intakes. The Alcohol Screening training byproject staff used materials designed to assuage these concerns and normalize the conversation around alcohol andother drug use (Kennedy et al., 2004; Watson, 2010). Although exit interviews revealed that discussing prenatal alcohol use wasstill challenging for a small number of staff, of 33 respondents to the question, “How many families becameupset or offended by the questions about their prenatal alcohol use?” 28 said “none” and only5 said “just a few.” This suggests that with adequate training and experience, the discomfort of askingprenatal alcohol exposure questions may be reduced. It also suggests that taking an alcohol history may be moreuncomfortable for staff than for the families being queried. Evidence-based alcohol screening tools and briefinterventions are described by Floyd, Weber, Denny, and O'Connor (2009).
Cultural norms and traditions regarding alcohol use must be addressed in a manner that is acceptable and meaningful to each woman. Pregnant Cambodian women, for example, often drink rice wine to ensure a healthy pregnancy (D'Avanzo & Geissler, 2003; Kulig, 1995) but do not consider this to be an alcoholic beverage. Sensitivity to legal implications is also crucial; EI staff reported that immigrants, especially those with uncertain status, were reported to be reluctant to reveal alcohol/drug use out of fear of risking deportation.
Champions versus frontline staff
Champions who perceive the benefit of change are crucial to the adoption of any new protocol (Berwick, 2004), but champions alone are not sufficient (Greenhalgh, Robert, MacFarlane, Bate, & Kyriakidou, 2004; Koh et al., 2007). Although each of the 3 EI site directors served as champions, implementation at sites B and C was conducted by frontline staff with generally less knowledge of FASD. Site directors indicated that increased time for project training and a more positive perception of benefit could help the screening process.
As with any screening protocol, a low positive response rate may have been a disincentive to protocol adoption. At site A, the entire staff became “FASD champions.” They were a smaller, more experienced team with prior FASD exposure. Site A screened a significantly smaller number of children than sites B or C, but they also served a target population with high-risk factors for FASD (eg, poverty, transience, trauma histories, mental health disorders, stress, and tobacco use), and their early embrace of the protocols combined with this population resulted in 68% of all positive FASD screens. Sites B and C, with larger staff, less FASD experience, and less available training time, initially experienced more challenges with implementation.
Time for training
Early intervention providers in Massachusetts are paid on a fee-for-service basis. Training time is not generally a reimbursable expense. Site directors generously and creatively carved time out of existing staff meetings for training, but this adaptation made training time infrequent and abbreviated. Trainings such as “Maternal Alcohol Screening” and “FASD: Screening, Diagnosis, and Interventions” can be incorporated into the required statewide EI curricula and provided to all new staff members to ensure protocol fidelity and sustainability when staff turnover inevitably occurs (Koh et al., 2007). Ideally, a full-day training for groups of any size would be followed by monthly on-site check-ins. These 15-minute technical assistance check-ins during staff meetings can briefly address barriers and strategies to overcome them within teams implementing the screen. Technical support for supervisors can include telephone and e-mail and will encourage them in their oversight of protocol fidelity. An annual FASD refresher/update could keep the topic fresh.
Primary care referral process
Of children involved in Project FAST with at least 1 physical and 1 behavioral FASD risk factor, 6 of 20 (30%) were not referred by their pediatricians for specialist assessment. Helping pediatricians understand the benefits of diagnosis will likely help to improve referral rates to diagnosticians.
Another healthcare challenge was long wait times for specialist appointments. For example, the child who was eventually diagnosed with FAS was screened in January at the age of 26 months but did not see the diagnostician until the following September. It is notable that 45% of children identified were 25 to 36 months old at the time of screening. Since many of the families affected by FASD are low-income and often transient, some of the children who screened positive for FASD risk moved before their specialist appointment, while others aged out of EI. Providing a mentor or “navigator” to such families would facilitate the transition from EI to the next phase of services. Nonetheless, including “FASD Risk” in a child's chart may be useful should the child encounter difficulties in early educational settings.
This project was initially designed with a 5-year funding plan. Year 1 was dedicated to planning and identifying resources, and implementation of protocols began in year 2. Because of unexpected changes at the federal level, funding was discontinued for all projects during year 3.
We believe that full 5-year funding would have enabled us to further incorporate lessons learned resulting in the identification of more children at risk for FASD.
In spite of the low numbers of children screened in this pilot study, we maintain that it is feasible and important to screen children for FASD within the EI setting. This study was only able to run for a fraction of the planned time, and staff were just becoming comfortable with the procedures for new intakes and had not yet added the screen to the yearly, updated assessment for children already enrolled. Similar to screening children on the autism spectrum, staff acceptance and comfort level comes with time, practice, and results. Similarly, as both program staff and families begin to understand the importance of early identification for FASD, their questions to pediatricians regarding a possible diagnosis will help to press for more referrals and better services, just as in autism. Even those children who did not receive further assessment from their pediatrician will benefit from an increased awareness of the FASD diagnosis as a possible etiology for a child's developmental challenges. In the end, all these children will benefit.
RESOURCES REQUIRED FOR SCREENING IN EI SETTINGS
The 3 Ts: Trainer, training, and time
The primary resources needed for implementing FASD screening in EI programs are an FASD trainer and training time. There are numerous state and national FASD prevention and identification resources available at little or no cost (American College of Obstetricians and Gynecologists, 2006; CDC, 2009; National Organization on Fetal Alcohol Syndrome [NOFAS], 2004a, 2004b; NIAAA, 2005; SAMHSA FASD, 2009a), as well as FASD state coordinators across the country (SAMHSA FASD, 2010) that can provide linkages and resources. Once the training is finished and implementation begins, for follow-up technical assistance can ensure protocol fidelity, increase staff efficacy, and address any issues that might arise. Initial staff resistance will likely decrease as their comfort levels increase. Dedicated staff time and the insertion of FASD screening into existing EI intakes could simplify the process, increase buy-in, and improve the chances for protocol adoption (Greenhalgh et al., 2004; Gustafson et al., 2003).
While a champion does not ensure screening success, a champion is necessary for protocol overview, encouragement, linkage development, and scheduling. Staff buy-in will be increased when the site director displays enthusiasm and leadership for FASD identification and intervention. Linkage development and utilization of local resources will benefit all parties seeking to serve families affected by an FASD. Replication efforts would benefit from cost-free cross-training between EI sites and designated pediatricians/diagnosticians who are interested in improving their skills around FASD diagnosis and treatment, and development of linkages with alcohol use disorder outpatient/assessment programs.
POLICY AND PRACTICE IMPLICATIONS
The seminal work by Streissguth et al. (2004) on the benefits of early identification and intervention provides an opportunity and challenge to EI to screen children already at developmental risk. This could result in an increased number of children being referred for FASD diagnostic assessment and diagnosed early in life, when the benefits of intervention and treatment are greatest. Screening protocols like the one described here are transferable to other agencies that serve families with low socioeconomic status and other FASD risk factors: homeless shelters, WIC (women, infants, and children), child care, preschool centers, community health centers, and substance disorder family treatment programs. Project FAST also found the residential alcohol use disorder treatment community for pregnant and postpartum women eager for FASD information and resources.
To increase identification and intervention of children with FASD, EI programs can (1) complete a brief screen for FASD risk for every child entering their program and (2) develop/enhance linkages for medical referral/diagnosis and linkages to alcohol disorder treatment professionals. Diagnosis is predicated on pediatricians embracing the utility of an FASD diagnosis, and children's developmental services professionals can contribute to this effort. In order for children with FASD to receive the full benefit of available services, recognition of their disability needs to be made earlier and more accurately than is common today. Early identification and intervention can result in improved outcomes for children and their families. We assert that it is feasible and practical to screen children for FASD risk in EI and other early childhood settings.
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Keywords:©2011Lippincott Williams & Wilkins, Inc.
alcohol-related neurodevelopmental disorder; alcohol-related birth defects; alcohol use disorders; developmental delays; developmental screening; early intervention; fetal alcohol syndrome; prenatal alcohol exposure; fetal alcohol spectrum disorders; maternal alcohol histories