Table 1.

Comparison of Pediatric and Adult Health Care Models

Health Care System Characteristic	Pediatric Care Model	Adult Care Model
Practice Approach	● Family-centered ● Shared decision-making with parents	● Patient-centered ● Shared decision-making with patient
Clinic Location or Affiliation	● Frequently located in children’s hospitals	● Located in academic hospitals or private office-based settings ● NF care may be provided by general healthcare provider
Multidisciplinary Staffing	● Multiple subspecialists often available for multidisciplinary team approach to care - “one-stop shop”	● Few or no “one-stop shop” multidisciplinary clinics. Separate referrals and appointments for each specialist needed.
Care Coordination and Access to Support Services	● Coordination of care often provided by clinic coordinator or nurse navigator ● Social work and case management support often available	● Care coordination services often not provided ● Few public care coordination programs are available for adults with NF1 ● Less social work and case management staffing and support available
Length of Appointment	● Longer	● Shorter
Patient Time Alone with Healthcare Provider	● Sometimes, part of visit	● Entire visit, with need for patient permission for others to be present
Patient Role as Self Advocate	● Less, given parental support/presence during visit	● Essential
Scheduling Appointments and Medication Refills	● Parent/guardian	● Patient
Adherence to Care	● More frequent reminders and support from healthcare system ● Healthcare provider has the duty to report non-adherence that rises to the level of medical neglect	● Expectation of self adherence - often no appointment reminders or follow-up from missed appointments ● Healthcare provider has no reporting duty of non-adherence unless patient has a court-appointed guardian and is being neglected per provider opinion

Note: The table was modified from Got Transition® website.⁵