Integrating care for individuals with FASD: results from a multi-stakeholder symposium

BMC Health Serv Res. 2015 Oct 5:15:457. doi: 10.1186/s12913-015-1113-8.


Background: Fetal Alcohol Spectrum Disorder (FASD) has a significant impact on communities and systems such as health, education, justice and social services. FASD is a complex neurodevelopmental disorder that results in permanent disabilities and associated service needs that change across affected individuals' lifespans. There is a degree of interdependency among medical and non-medical providers across these systems that do not frequently meet or plan a coordinated continuum of care. Improving overall care integration will increase provider-specific and system capacity, satisfaction, quality of life and outcomes.

Methods: We conducted a consensus generating symposium comprised of 60 experts from different stakeholder groups: Allied & Mental Health, Education, First Nations & Métis Health, Advocates, Primary Care, Government Health Policy, Regional FASD Coordinators, Social Services, and Youth Justice. Research questions addressed barriers and solutions to integration across systems and group-specific and system-wide research priorities. Solutions and consensus on prioritized lists were generated by combining the Electronic Meeting System approach with a modified 'Nominal Group Technique'.

Results: FASD capacity (e.g., training, education, awareness) needs to be increased in both medical and non-medical providers. Outcomes and integration will be improved by implementing: multidisciplinary primary care group practice models, FASD system navigators/advocates, and patient centred medical homes. Electronic medical records that are accessible to multiple medical and non-medical providers are a key tool to enhancing integration and quality. Eligibility criteria for services are a main barrier to integration across systems. There is a need for culturally and community-specific approaches for First Nations communities.

Conclusions: There is a need to better integrate care for individuals and families living with FASD. Primary Care is well positioned to play a central and important role in facilitating and supporting increased integration. Research is needed to better address best practices (e.g., interventions, supports and programs) and long-term individual and family outcomes following a diagnosis of FASD.

Publication types

  • Congress
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Consensus*
  • Continuity of Patient Care*
  • Delivery of Health Care, Integrated*
  • Disabled Persons
  • Female
  • Fetal Alcohol Spectrum Disorders*
  • Health Policy
  • Humans
  • Interdisciplinary Communication*
  • Pregnancy
  • Primary Health Care
  • Quality of Life
  • Social Work