Quality standard

Quality statement 4: Neurodevelopmental assessment

Quality statement 4: Neurodevelopmental assessment

Quality statement

Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.

Rationale

Fetal alcohol spectrum disorder (FASD) is one possibility when prenatal alcohol exposure is being considered as a cause of neurodevelopmental disorder. A neurodevelopmental assessment is needed to confirm, or rule out, a diagnosis of FASD. The neurodevelopmental issues associated with FASD are complex and varied, so the specific aspects of the assessment and the professionals involved will vary. Confirmation of a diagnosis of FASD (or risk of FASD) ensures the child or young person receives the right treatment, care and support while plans for longer-term management are being made.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.

Structure

Evidence of local services with healthcare professionals with expertise in neurodevelopmental assessment who have had additional training in FASD.

Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from service specifications, NHS trust directories of services and clinical commissioning group pathways.

Outcome

Diagnosis rate for FASD.

Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records.

What the quality statement means for different audiences

Service providers (such as community paediatric services, child development centres, and child and adolescent mental health services) ensure healthcare professionals with expertise in neurodevelopmental assessments have additional training in FASD. They enable professionals to join multidisciplinary teams that may be local, central or virtual.

Healthcare professionals (such as community paediatricians, psychiatrists, psychologists, clinical psychologists, paediatric neuropsychologists, speech and language therapists, and occupational therapists) are involved in neurodevelopmental assessment of children and young people with prenatal alcohol exposure if there are clinical concerns about their physical, developmental or behavioural difficulties. The assessment covers the areas of brain function known to be affected by prenatal alcohol exposure with the aim of making a diagnosis and developing a management plan. When diagnosing FASD, healthcare professionals should create an environment that supports all those affected, and avoid blaming, stigmatising and inducing feelings of guilt in the parents.

Commissioners (such as clinical commissioning groups or integrated care systems) commission services for neurodevelopmental assessments that consider FASD as a diagnosis.

Children and young people who are known to have been exposed to alcohol before birth or have all 3 facial features suggesting this have a more detailed assessment if there are concerns. Different healthcare professionals may be involved in assessing their motor skills (movement), language, cognition (thinking and reasoning) and their ability to manage emotions.

Definitions of terms used in this quality statement

Confirmed prenatal alcohol exposure

Documentation that the biological mother consumed alcohol during pregnancy based on:

  • reliable clinical observation

  • self-report or report by a reliable source

  • medical records documenting positive blood alcohol concentrations

  • treatment for alcohol-related problems.

The presence of all 3 facial sentinel features (short palpebral fissures, smooth philtrum and thin upper lip) has high specificity for prenatal alcohol exposure and FASD which means that confirmation of alcohol exposure is not needed when all 3 are present. [Adapted from Scottish Intercollegiate Guidelines Network guideline on children and young people exposed prenatally to alcohol, recommendations 2.1.1 (page 11) and 3.1.1 (page 15)]

Neurodevelopmental assessment

An assessment by a multidisciplinary team to confirm or exclude a diagnosis of FASD covering:

  • motor skills

  • neuroanatomy or neurophysiology

  • cognition

  • language

  • academic achievement

  • memory

  • attention

  • executive function, including impulse control and hyperactivity

  • affect regulation

  • adaptive behaviour, social skills or social communication.

FASD diagnosis requires the ruling out of other aetiological factors, for example, genetic and associated comorbidities. A diagnosis of FASD can only be made when there is evidence of pervasive and long-standing brain dysfunction in 3 or more of the above areas of neurodevelopmental assessment.

Full details, including method of assessment and special considerations are set out in the source guideline. [Adapted from Scottish Intercollegiate Guidelines Network guideline on children and young people exposed prenatally to alcohol, recommendation 3.4.1 (page 19) and expert opinion]

Clinical concerns

Significant behavioural issues causing disruption to family and school, developmental delays that are affecting the child or young person's life, and failure to thrive physically and emotionally. [Expert opinion]