Karran Thorpe, RN, PhD and Lynn Basford, BA Hons, MA, RGN, NDN, PWT, RNT

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Karran Thorpe, RN, PhD and Lynn Basford, BA
(Hons), MA, RGN,NDN, PWT, RNT
Fetal Alcohol Spectrum Disorder State of the
Evidence Review Regarding Prevention
Presenters
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• FASD Review - Supported by

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Purposes of presentation

• Identify purpose and research questions
• Discuss methodology
• Describe state of the evidence
• Describe prevention in action
• Offer recommendations

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Research Team

• Core Team Members
• Lynn Basford, BA (Hons), MA,
• RGN, NDN, PWR, RNT PI
• Karran Thorpe, RN, PhD Co-PI
• Robert Williams, PhD, C Psych Co-PI
• Kelly Cardwell, BA RA
• Judith Droessler, PhD
• Noella Piquette-Tomei, PhD
• Sameer Deshpande, PhD
• Alexandre Bureau, PhD
• Jason Solowoniuk, BSc

• Extended Team Members
• Sharlene Campbell, AAN, MN
• Vedna McGill, RSW
• Cathy Ohama, BEd
• Bev West, BHSc
• Rebecca Many Greay Horses, BA
• Mike Basil, PhD
• Steering Committee Members
• Vern Jubber, MD
• Gary Roberts, PhD
• Robert Sutherland, PhD
• Charlie Weaselhead

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FASD DEFINED

• Fetal Alcohol Spectrum Disorder (FASD) is an
  umbrella term describing the range of effects
  that can occur in an individual whose mother
  drank alcohol during pregnancy. . . . with
  possible lifelong implications.
• NOFAS Terminology Summit, April 15, 2004

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Goal of Study

• To determine critical elements regarding efficacy
  and appropriateness of preventative strategies
  and models regarding fetal alcohol spectrum
  disorder.

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Key Research Questions

• What effective strategies can be identified?
• What preventative models (i.e., primary,
  secondary, and tertiary) are used in practice to
  influence the reduction in incidence and
  prevalence?
• What are the major barriers to effective
  application of prevention strategies and models?
• What is the substantial body of literature that
  can be critically appraised in order to determine
  best practice?

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Key Research Questions (contd)

• What is the body of literature that can be
  critically appraised in order to determine best
  policy initiatives?
• What are the gaps in research to inform future
  research initiatives?
• What preventative strategies and models, based on
  scientific studies, are most effective in
  preventing a child being born with FASD?
• What preventative strategies and models are most
  effective for rural, urban and aboriginal
  communities?

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What we did . . .

• Cochrane-style review
• Literature Search
• International literature in English, 1970
• 26 online databases, variety of disciplines
• 6 library catalogues
• 50 web sites
• Checked reference lists
• Contacted key researchers

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What we did . . . (cont.)

• Literature Retrieved
• Primary, Secondary, Tertiary Prevention
• Models, strategies, outcomes, evaluation
• Formats
• Journal articles, books, grey literature (e.g.,
  government publications, theses/dissertations,
  web documents)
• Quantitative, qualitative
• Emphasis on randomized controlled trials
• Of 1,100 documents reviewed - 425 surfaced in
  double-blind review

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Early Modern Period

• The Gin epidemic of 1720-1750 raised concerns
  that maternal alcohol consumption produced weak
  and ill-tempered children
• William Hogarth. Gin Lane. 1751. Engraving. The
  British Museum, London, UK. (Olgas Gallery,
  Online, http//www.abcgallery.com/

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PREVENTION
Primary prevention Refers to the protection of
health by personal and community-wide effects,
including alcohol regulatory measures and
increasing public awareness. Target population is
broad.
Secondary prevention Measures available to
individuals and populations for the early
detection and prompt and effective intervention
to correct departures from good health. Target is
those at risk.
Factors
Environmental
HEALTH
Tertiary prevention consists of the measures
available to reduce or eliminate long-term
effects and disabilities. Target is those
already affected. (Basford, 2004)
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Prevention in Action Primary

• Social marketing strategies
• Legal approaches
• Education approaches

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Social Marketing

• Social Marketing is the use of marketing
  principles and techniques to influence a target
  audience to voluntarily accept, reject, or
  abandon a behaviour for the benefit of
  individuals, groups, or society as a whole
  (Kotler, Roberto Lee, 2002, p. 5).

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Legal Approaches Warning Labels

• US and Canada policies in place
• US warning label
• GOVERNMENT WARNING According to the Surgeon
  General, women should not drink alcohol beverages
  during pregnancy because of the risk of birth
  defects.
• WARNING Drinking alcohol during pregnancy can
  cause birth defects.

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Educational Needs

• Education models need to reflect on the knowledge
  necessities of health care professionals and the
  mainstream teaching community.

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Prevention in Action Secondary

• Symptoms
• Diagnosis
• Screening tools
• Biochemical markers

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FASD Manifestations
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FASD Diagnosis

• Historically there has been some difficulty in
  making a diagnosis of FASD
• 62 physical features
• 20 cognitive features
• 34 social-behavioural features
• (Alcohol consumption, Growth retardation, Central
  Nervous System (CNS) anomalies or dysfunction,
  Characteristic facial features)

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Screening Tools

• TWEAK - judged one of the better tools
• T-ACE 2nd for sensitivity and specificity
  scores
• MAST reasonable performance but long
• NET not as good performance
• CAGE better to use in conjunction with others
• AUDIT 10 question assessment not compared to
  other tests
• 5 Ps different style (environmental risks)
• KEMPE Universal Newborn Family Stress Screening

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Prevention in Action Tertiary

• Women-only programs
• Self-help programs
• Home visitation programs

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Parent-Child Assistance Program Gold Standard

• 1978, established in Washington State Medical
  School
• Streissguth and her colleagues provide leadership
• Includes public education, professional
  training, client services, and evaluation

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P-CAP Home Visitation Program

• Paraprofessional home visitation team
• Share similar background, culture, and values as
  clients
• Support clients in accessing services, achieving
  goals
• Enhance development of long-term goals to
  maintain sobriety, stability, and independence

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Recommendations Education

• Health care professionals need essential
  knowledge and skills to assess and diagnose FASD.
• Knowledge dissemination is critical to address
  cultural issues appropriately and effectively.
• Health curricula need to include knowledge,
  skills, attitudes, and understanding of the FASD
  experience.

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Recommendations Practice

• Practice models or instruments need to
  incorporate coping assessment as part of the
  screening process.
• Prevention programs for women should provide a
  range of services counseling, social support,
  etc.
• Empower communities to assist in prevention
  programs.

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Recommendations Policy

• Establish a universal policy direction to support
  zero tolerance during pregnancy.
• Focus policy on FASD as a societal issue, not
  simply a womans issue.
• Create a national institute of FASD research
  findings to support dissemination of best
  practices.

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Recommendations Research

• Incorporate evidence from scientific inquiries to
  provide a framework for evidence-based practice.
• Explore the effects of early diagnosis and
  intervention.
• Evaluate the effectiveness of various screening
  tools to achieve a universal approach of
  assessment.

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What is the State of the Evidence
CHAOTIC!!!

• Contradictory findings in many reports
• No consensus or agreement
• Confusion exists over
• Etiology
• Diagnosis
• Prevention/intervention
• Ethnicity may/may not be a risk factor
• Clear Need for Standardization

FASD
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After all, heres our final goal