TABLE 3.

Recommendations for Diagnosis Communication of FS to Youth and Families

Phase	Recommendation
Initial diagnosis disclosure	• Allot significant time to explain and discuss the diagnosis • Listen to youth and family experiences • Express compassion and use a gentle bedside manner • Understand that youth and parents are experiencing fear and stress • Inform them that the FS are “real” and not “faked” • Communicate the diagnosis in clear, simple language to both the family and youth as well as the youth individually/separately • Understand that family and youth have different developmental communication needs (i.e., analogies may work for family but not youth, who may need more concrete explanations) • Reassure them that cognitive behavioral-informed therapy is effective • Reassure them that the prognosis is good • Allow time for questions
Discussion of mental health and cognitive behavioral-informed therapy	• Normalize discussion of mental health as part of routine medical care • Inquire about the youth's mental health and stressors, but consider doing so privately with the youth alone and asking if they prefer to speak verbally or complete written questionnaires like the PHQ-2 or GAD-2 • Convey that FS can be linked to stressors, although also state that up to one third of the time there is no identifiable stressor or mental health condition • Maintain a list of appropriate referrals of behavioral health providers willing to treat FS to share with youth and families in your catchment area
Written resources	• Provide written resources to family and youth at a developmentally appropriate level • Provide a written explanation of the diagnosis and action plan for use at home and in schools • Go over the written resources during initial diagnosis communication • Consider including a concrete diagram of the nervous system and its connection to FS • Provide vetted referrals for behavioral health treatment as described above
Follow-up appointment	• Schedule a follow-up appointment with pediatric neurology for verbal reinforcement of the diagnosis and opportunity for further questions

Abbreviations:

FS = Functional seizures

GAD-2 = Generalized anxiety disorder 2-item

PHQ-2 = Patient health questionnaire 2