Examining the role of social workers within clinical metabolic genetics care

Optimal care for individuals with inborn errors of metabolism (IEMs) requires a well-integrated multidisciplinary care team in which each member contributes specialized expertise to address the complex medical, psychosocial, and logistical challenges faced by patients and their families and caregivers. Among these team members, metabolic social workers offer essential competencies that position them as integral to patient care, with the potential to improve care and outcomes for patients with IEMs. Social workers are uniquely equipped to identify and address social determinants of health, advocate for accommodations in daily living and educational settings, and provide psychosocial support for patients and families during critical times. Their integration into models for chronic conditions relevant to IEMs has been associated with benefits such as improved treatment maintenance, enhanced quality of life, and reduced health care utilization. Despite real-world evidence highlighting the benefit of social workers in rare and complex diseases, including IEMs, many practices struggle to secure dedicated social work support. Here, we aim to underscore the importance of integrating social workers into the metabolic team by outlining the breadth of their responsibilities and highlighting how their specialized skill set and experience help deliver comprehensive care for patients with IEMs.