Intergovernmental committee on Drugs working party on Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders in Australia: An Update
9.1 International diagnostic services
In the study by Peadon and colleagues, FASD clinics were identified by searching literature databases (MEDLINE, CINAHL, EMBASE and PsycINFO) and the internet using the Google search engine (Peadon et al. 2008) and reviewing references in published papers. In countries in which no clinic was identified in the initial search, researchers and organisations identified as being involved with people with FASD (e.g. through having published papers or presented research at scientific meetings) were contacted. A self-administered, three-page
postal questionnaire, piloted by structured telephone interview, was used to collect information from clinics about their patient population (e.g. number of patients, age, referral procedures), staff (including health professional group, role and training), assessment process (including diagnostic tools and diagnostic criteria used) and other services or roles provided (e.g. management, research). For clinics that did not respond to the survey, published evaluation reports were used by the researchers, when available, to complete questionnaires.
Questionnaire recipients were also asked to provide contact details of other clinics known to them.
Questionnaires were completed for 34 clinics: 29 were in North America (the majority in the USA and Canada); two in Africa (both were in South Africa); two in Europe (in Italy and the UK); and one in South America (Chile). Characteristics of these clinics are shown in Table 9.1. There were no clinics identified in Asia or Australasia. There was considerable variation between clinics in services offered, clinic populations, type and numbers of health professionals, methods of assessment and funding sources. Clinics saw between 20 and 1600 new patients per year. In 24 of the clinics, the majority of children seen lived in out-of-home care, including foster and extended family care, and in 20 of these clinics more than 75 percent of children lived away from their biological parents. Three clinics saw predominantly Indigenous children. Most clinics accepted referrals from multiple sources, including eight clinics with no specific criteria for referral. All clinics offered a diagnostic service and 16 also screened at-risk children who had been exposed to alcohol in utero. However, only 15 clinics offered short-term management and nine offered long-term management of children with FASD.
All but one of the 33 clinics employed a multi-disciplinary team, the most common professional team members being paediatricians and psychologists. All clinics employed medical staff, 33 employed psychologists, 23 employed allied health staff (e.g. physiotherapists, occupational therapists) and 29 employed family support staff (e.g. social workers, mental health workers, case managers, family advocates). In most (32) clinics at least one member of the team had specialist training in the assessment of children for FASD. Assessment methods varied: 23 routinely performed physical examination; 32 did neurobehavioural assessments; 25 took photographs; and 17 used facial diagnostic software. The median duration of consultation was 3.25 hours with a range between 30 minutes and six hours.
Five different sets of diagnostic criteria were used by clinics and 11 clinics either simultaneously used more than one set of diagnostic criteria or used an adaptation of standard published criteria (Stratton et al. 1996; Astley 2004; Bertrand et al. 2004; Chudley et al. 2005; Hoyme et al. 2005). Funding came from a variety of sources, including charitable and community organizations and few clinics had stable ongoing funding. Four clinics outside North America were funded partially or wholly by research grants from the USA, suggesting they may not be sustainable. Only two clinics (both in the USA) relied wholly on patient fees (Table 9.1).