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

• Main Authors: Masotti, Paul, Longstaffe, Sally, Gammon, Holly, Isbister, Jill, Maxwell, Breann, Hanlon-Dearman, Ana
• Format: Article in Journal/Newspaper
• Language: English
• Published: BioMed Central Ltd. 2015
• Subjects: Fetal alcohol spectrum disorder; Integrating care; Primary care; Health policy; Research needs; First Nations
• Online Access: http://www.biomedcentral.com/1472-6963/15/457

Abstract 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.