Table 2.

Recommendations for improving adult metabolic medicine in the United States

Current Barrier to Adult IMD Care	Potential Solution
• Scarcity of adult-trained biochemical geneticists.	• Employment of adult-oriented ancillary staff: social worker, case manager, care navigator. • Improved partnerships with local adult primary care providers.
• Limited trainee exposure to adult metabolic medicine.	• Implementation of logbook category specific to adult metabolic care for Medical Biochemical Genetics fellows.
• Difficulty identifying adult medicine specialist with an interest in IMD patients	• Outreach to local medical community clinicians interested in chronic childhood-onset disease and HCT (ie, physicians trained in internal medicine and pediatrics or family medicine). • Promote adult metabolic medicine at institution-wide educational opportunities (ie, grand rounds). • Development of adult complex/coordinated care clinics for better integration of health services.
• IMD clinicians are less familiar with management of adult-onset comorbid medical conditions	• Increase visibility of medical genetics in internal medicine and family medicine residencies to recruit trainees. • Develop more combined internal medicine/genetics residencies.
• Young adult patients unprepared for adult models of health care delivery	• Preemptive discussion about differences in adult care, including shorter appointments, greater emphasis on patient-driven decisions, limited care coordination, more fragmented care. • Schedule a debriefing session after patient’s first appointment with new adult providers.
• HCT readiness predominantly measured by provider opinion	• Use of validated or IMD-specific HCT readiness assessments, such as Transition Readiness Assessment Questionnaire or NECMP HCT checklist
• Lack of portable health care summaries	• Creation of comprehensive portable health care summaries using template provided by GotTransition or NECMP.
• HCT minimized for adolescents who remain with the same provider	• Using GotTransition's HCT toolkit for patients who will not be transferring providers
• Young adults on dietary therapy have increased complexity preventing medical autonomy	• More rigorous HCT planning that starts earlier and focused on the substantial responsibility for self-care, education on emergency signs and symptoms, and greater need for personal advocacy. • Extensive documentation for acute care in paper and electronic forms. Consider medical alert bracelet.
• Caregiver resistance to HCT and transfer	• Introduce HCT early and reinforce concepts at every visit. • Use patient and caregiver input to set goals for medical and social autonomy. Measure HCT progress through interval transition readiness assessments.

HCT, health care transition; IMD, inherited metabolic disorder; NECMP, New England Consortium of Metabolic Programs.