Quantitative and qualitative studies as well as patient input in a health-technology assessment on Foetal Alcohol Spectrum Disorders (FASD)

Tags: Poster
Hultcrantz M1, Bertilsson G1, Domeij H1, Fahlström G1, Heintz E1
1Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU)

Background: Foetal Alcohol Spectrum Disorders (FASD) includes several conditions characterised by a spectrum of symptoms ranging from physical birth defects to neurodevelopmental disorders, which may be caused by alcohol consumption during pregnancy.

Objectives: The aim was to assess health, social situation and interventions for individuals with a FASD condition. The overall questions were how different FASD-related conditions, and interventions aimed for these conditions impact the child and his/her relatives, from a social, medical and economical perspective.

Methods: We conducted 3 systematic reviews assessing: prevalence of disabilities and social situation of individuals with FASD; effectiveness and cost-effectiveness of interventions offered to individuals with FASD and their parents; and, experiences of individuals with FASD and their families regarding the conditions and interventions. The level of confidence in the quantitative and the qualitative syntheses were assessed using the GRADE or CERQual approach, respectively. Patient input was collected through a collaboration with a non-profit organisation for individuals with FASD and their relatives.

Results: Although the included studies did not provide a clear picture of the prevalence of disabilities, nor any guidance for selecting specific FASD forms of interventions, a lot can be improved with regards to the treatment given by professionals. Individuals with FASD and their parents clearly point out the need for more knowledge, understanding and support from professionals within the healthcare, social services and education systems.

Conclusions: Using various approaches, this assessment gives a comprehensive picture of what is known about the prevalence of disabilities in individuals with FASD-related conditions, the experiences of living with FASD and the effectiveness of interventions.