Chapter 2: Assessment and diagnosis of FASD among adults: a national and international systematic review – Literature review methodology

2.0 Literature review methodology

This section provides an overview of the approach and methodology used to identify the relevant literature from the peer-reviewed research literature and a select number of web-based and practice literature.

2.1 Approach and Methodology

A structured approach was used to determine the source of materials for review. The peer-reviewed literature was the main source of information and data about diagnosis and assessment of adults with FASD. However, a certain amount of grey literature was located by consulting with a select group of FASD researchers and service providers, who identified sources outside the quality scholarly literature databases.

2.2 Peer-Reviewed Literature: Search and Review Strategies

Searches for peer-reviewed journal articles and dissertations were conducted using the University of Calgary online databases in the area of Health Sciences and Medicine. These searches are outlined below. The Google Scholar search engine was also used to conduct more general searches. All searches were limited to research with humans, published in English.

Key criteria were used in the decision tree for selecting articles for inclusion/exclusion in the literature review. We located each document and reviewed the abstract or entire document if there was no abstract to determine if the document met our inclusion criteria. The following describes the inclusion/exclusion criteria.

Inclusion criteria: We included documents that discussed diagnosed FASD, and the related categorical diagnoses in adult humans. We also included some studies of adolescents when it was thought to contain diagnostic and assessment information that might be relevant to adults.

Exclusion criteria: We excluded documents that were not in English, papers on animal studies and papers without an FASD or related diagnosis. No documents were excluded based on date of publication.

During the canvass of key informants for websites and practice-based literature that should be included in the review, several suggested peer-reviewed articles that had not been captured in the original searches. A third source of documents came when published articles were reviewed for important references that had been missed in the online searches but were presented in the reference lists of key journal articles. This is known as a “go backwards approach (i.e. review citations for selected articles to determine prior articles to consider). When there was an important researcher identified, a “go forward (i.e. use of citation indexes to identify articles citing important references) approach was used to identify any new relevant citations.

Once abstracts had been identified as relevant to the criteria and worthy of further exploration, the full article was accessed. The articles were skimmed, after which a further selection was made based on criteria including the terms discussed in the literature review outline and proposal. As well, articles were included if they were relevant to diagnosis. Articles were considered even if they did not explicitly refer to adults in the research, but if they referred to symptoms possibly developing in adulthood.

2.3 Practice and Other Literature: Search and Review Strategies

Literature database searches are often constrained by the coverage of the databases, the key words adopted, and the journals included. The research team, therefore, conducted additional searches for information from Internet websites for practice information. For example, some agencies have a described protocol for the diagnosis and assessment of adults. A description of their procedures and protocols was informative. The web searches involved locating agencies in Canada and the United States, which were identified through general Google searches or by key researchers known to the research team.

Information on FAS/FASD is developed by practitioners or community groups, so it was important to review websites for relevant unpublished resources, including tools, checklists, organizational descriptions, program development, workshops and descriptive experiences from adults living with or caring for an adult living with FAS/FASD. Searches were performed on Google with the following terms:

• FAS
• FASD
• FASD and Canada
• FAS and Adult
• FAE and Adult
• Fetal Alcohol and Adult
• Fetal Alcohol and Adult and Diagnosis
• Fetal Alcohol and Diagnosis
• FAE

2.4 Processing the Literature

The resulting literature included over 100 peer reviewed journal articles and practice-related documents. Each document was inventoried to categorize the information for further analysis. A concept-centric approach was used to review and classify the studies collected. This involved the creation of a concept matrix to review, synthesize and critically analyze the literature and data located on adult diagnosis and assessment. Once the concept matrix was complete, documents could be grouped, summarized and critically analyzed.

The inventory consisted of classifying articles under the following headings and subheadings:

• Screening/Referral: Populations (adult, adolescent, child); Screening Process; Screening Tools/Techniques
• Diagnosis: FAS; pFAS/FAE; ARBD; ARND; comorbid
• Assessment Tools/Techniques: Cognitive; Physical; Emotional; Behavioural
• Emerging Issues: Culturally Appropriate; At-risk Population; Absent Features; Multidisciplinarity
• Type of Evidence: Conceptual; Evidence-based; Practice-based; Incidence/Prevalence
• Notes: Important highlights, findings or other relevant

In total, over 100 adult relevant documents were inventoried.^{Footnote 3} The investigators then reviewed and analyzed all of the inventoried documents. In addition, classic research and review articles were included in the bibliography because they provided necessary contextual material for the literature review of adult assessment and diagnosis.

• 2.1 Approach and Methodology
• 2.2 Peer-Reviewed Literature: Search and Review Strategies
• 2.3 Practice and Other Literature: Search and Review Strategies
• 2.4 Processing the Literature