Contact was made with clinics identified in the literature search, research clinics linked to these, and potential clinics identified after general enquiry. We had responses to our enquiries stating that there was no identified specialist FASD diagnostic service from Europe (Denmark, Finland, France, The Netherlands, Norway, Russia, Spain, Sweden, Switzerland, Ukraine); Asia (Japan) and Australasia (Australia, New Zealand). No response was received from Brazil and Germany. We received 20 completed questionnaires from eligible clinics and completed questionnaires for 14 further clinics using published evaluation reports identified in the search (Figure ). Of the 34 clinics, 24 clinics were from the USA, five from Canada and five from outside North America (United Kingdom, Italy, Chile, South Africa) (Table ). The completed questionnaires included one group of three linked research clinics in the USA, South Africa and Italy, which were included as separate clinics. Two additional clinics in the USA had external research clinics. However, there was insufficient information for inclusion of these sites as separate clinics. Aggregate data was available on one state clinic network in the USA but individual clinic data was not available for the eleven teams within the network.
Clinics had a variety of funding sources, services offered, clinic populations, staff and methods of assessment (Table ). Funding came from many sources, including charitable and community sources in four cases. One clinic had closed because of lack of funding and seven were funded by research grants. Four of the five clinics outside North America were funded partially or wholly by research grants from the USA. Only two clinics, both in the USA, relied wholly on patient fees (self-pay or insurance) and did not receive any state, federal, research or charitable contributions.
All 34 clinics offered a diagnostic service. Sixteen were also involved in screening for at risk children; 15 offered short term management; and nine offered ongoing management (Table ). Thirty-one clinics offered training to external health professionals and 11 provided training for parents. Twelve clinics provided outreach services, 10 provided case conferencing, six provided home visits, and one provided a telemedicine service.
Referral criteria varied between clinics (Table ). Eight of the 34 clinics had no specific referral criteria. Of the clinics with referral criteria, some required only a history of pre-natal alcohol exposure, whereas others had more specific criteria mirroring the diagnostic features of FAS (i.e. prenatal alcohol exposure, central nervous system disorder and growth deficiency). Most clinics (n = 27) accepted referrals from multiple sources. Primary care practitioners were the most common referral source (n = 27), followed by specialist paediatricians (n = 24). Other common referral sources included self or family referral (n = 23), child protection services (n = 23), mental health services (n = 22), schools (n = 21), legal services (n = 21), family support groups (n = 11), drug and alcohol services (n = 10), other health professionals (n = 10) and geneticists (n = 8). Five clinics with a research focus did not accept referrals but specifically recruited children exposed to alcohol in utero for assessment.
There were differences between the patient populations of clinics (Table ). The number of new patients seen in clinics each year ranged from 20 to 1600. The rate of diagnosis of FAS ranged from 0.7% to 45% (median 7.4%). The rate of diagnosis of other FASD ranged from 2.5% to 100% (median 25%). Twelve of the 17 clinics who provided estimates of both FAS and other FASD rates in their clinic population stated a higher rate of other FASD than FAS diagnosis. An estimate of the ethnic composition of their clinic population was provided by 18 clinics: 10 reported seeing a majority of Caucasian children; three clinics reported that children seen were most commonly of indigenous origin. Twenty-four clinics reported that the majority of children lived in alternate care (away from their biological parents). In 20 of these clinics, 75% or more of the children seen were in alternate care.
Thirty-three of the 34 clinics were staffed by a multidisciplinary team; however the composition of teams varied (Table ). All 33 multidisciplinary teams had at least one medical and one psychology professional. The one clinic that was not run by a multidisciplinary team was staffed by a dysmorphologist. At least one member of staff had undergone specialist training for FASD in 32 clinics. In 22 clinics, all members of staff had undergone specialist training.
FASD Diagnostic Clinic Team Composition (n = 34)
For thirty clinics, information was available on their clinical assessment process. Four clinics did not request any information prior to the visit for assessment. Thirteen of those that required prior information requested medical assessment reports; 12 requested childcare, preschool or school reports; 11 requested developmental or psychometric assessments; nine requested Child Protection Service or Foster Service records; and four clinics requested birth records. The number of visits required for assessment and diagnosis ranged from one to three with a median of one visit. Two clinics responded that the number varied from child to child. The duration of visits was between 0.5 and 6 hours, with a median of 3.25 hours (16 of 23 responses gave a specific numerical duration for each visit; others were either variable or age-specific).
The primary caregiver(s) and the child attended the assessment in all 33 of the clinics for which we had information. In three clinics, siblings also attended the assessment and in one other clinic, siblings were invited to attend if appropriate. Six clinics specified that case managers or social service workers or child protection workers attend the clinic. In fifteen clinics, all members of the multidisciplinary team took part in the diagnostic process. In two clinics, the geneticist/dysmorphologist made the diagnosis alone, and in all other clinics more than one member of the team took part in the diagnostic assessment process.
Clinics had different approaches to the assessment process. Twenty-three reported that they routinely carried out a physical assessment of the child. Twenty-five clinics took facial photographs and seventeen clinics used facial analysis software. Other routine assessments included audiology (n = 7), genetic testing (n = 7), vision assessment (n = 6) and neuro-imaging (n = 5). Thirty-two clinics carried out some neurobehavioural assessment. One clinic did not respond to this question, and one did not carry out any neurobehavioural assessment. Neurobehavioural assessments included: behavioural assessment (n = 28); motor or visual-motor or perception tests (n = 28); sensory function (n = 22); cognitive or developmental testing (n = 19); neuropsychometric tests (n = 17); adaptive behaviour or social skills or social communication (n = 17); communication assessment (n = 13); educational or academic assessment (n = 12); and neurological examination (n = 12).
Information was sought on the diagnostic criteria clinics used. Of the 23 clinics using one set of diagnostic criteria, fourteen were using the Washington 4-digit Diagnostic code (2004) [11
], eight were using Hoyme et al's 2005 revision of the 1996 Institute of Medicine criteria [13
], one was using the 1996 Institute of Medicine's criteria [14
] and none were using the Center for Disease Control's 2004 guidelines [12
]. Eleven of the 34 clinics used more than one of the published criteria or an adaptation of published criteria. Two of the clinics using the Washington 4-digit Diagnostic code as their only diagnostic criteria had made adaptations to it. Nine clinics were using a combination of criteria: Washington 4-digit Diagnostic code, Center for Disease Control's 2004 guidelines and 1996 Institute of Medicine (n = 2); diagnostic blend of Hoyme et al, Canadian guidelines, Washington 4-digit Diagnostic code and 1996 Institute of Medicine (n = 1); Hoyme et al, Washington 4-digit Diagnostic code and 1996 Institute of Medicine (n = 1); Canadian guidelines and Washington 4-digit Diagnostic code (n = 1); Washington 4-digit Diagnostic code and 1996 Institute of Medicine (n = 1); Hoyme et al and 1996 Institute of Medicine (n = 1); Center for Disease Control's 2004 guidelines and 1996 Institute of Medicine (n = 1); 1996 Institute of Medicine and other criteria (n = 1).
Of the 34 clinics included in the survey, fifteen offered short-term management and nine offered longer-term management. Of the 24 clinics offering management to their patients following diagnosis, a variety of interventions were used. The most common intervention was provision of family support services (n = 10). Other management offered included counselling or behaviour management (n = 6), speech therapy (n = 5), case management (n = 4), physiotherapy (n = 4), occupational therapy (n = 4), child and adolescent mental health services (n = 4), and drug and alcohol (n = 3). For clinics that did not offer management (n = 10), referrals for follow up care and management were made to local services (n = 2), state services (n = 1), to the school district (n = 2) or back to the primary care practitioner (n = 1).