Table 6.

Recommendations: Outpatient Services

Outpatient care 31. Recommendation: All epilepsy centers should optimize scheduling to achieve timely appointments both for new and existing patients. This should include triaging patients with urgent need for evaluation. CB

32. Recommendation: All epilepsy centers should include telehealth services as an option for outpatient care. CB   Remark: The center should have the appropriate infrastructure to provide telehealth services and staff training on providing secure telehealth services. CB

33. Recommendation: All epilepsy centers should facilitate patient communication using both telephone and virtual health care access services with prompt response to patient concerns. CB

Medication management 34. Recommendation: All epilepsy centers should regularly assess patient medication adherence and side effects as part of routine outpatient care. CB   Remark: Centers should have a protocol that guides assessment and documentation of medication adherence and side effects. CB   Remark: Centers should have personnel with expertise in pharmacology (pharmacists, epileptologists) to address side effects and increase adherence. CB

35. Recommendation: All epilepsy centers should have strategies to assist patients with navigating barriers to medication access. CB   Remark: Centers need to recognize this problem for patients and take responsibility to connect patients with available resources. CB   Remark: Centers should have social workers able to assist patients whose needs cannot be met by available resources. CB

Care coordination 36. Recommendation: All epilepsy centers should have a care coordinator(s) assigned to facilitate referrals for services a center does not provide, to facilitate communication between center providers and outside specialists or agencies, to ensure smooth patient transitions between inpatient and outpatient care, and to assist in transitioning from pediatric to adult epilepsy care providers. CB   Remark: Care coordinators may also take a direct role or assist in securing medication and treatment authorizations, home health care services, and   obtaining medical equipment for outpatient use. CB   Remark: Some of the responsibilities of care coordination could be met by an epilepsy nurse, nurse navigator, advanced practice provider (APP), social   worker, or other personnel. However, this does not replace the need for a designated care coordinator. CB

37. Recommendation: Epilepsy centers that serve children should have a well-defined protocol to facilitate transition between pediatric and adult care. CB   Remark: Transition of care includes pretransition planning, transfer, and integration into adult care. CB   Remark: Transition education for persons with epilepsy and caregivers should begin in early adolescence. CB

Psychogenic Nonepileptic Events 38. Recommendation: All epilepsy centers should be able to provide comprehensive care for PNEEs. CB   Remark: Centers should have psychologists or psychiatrists with experience managing PNEE on staff or available via an established referral relationship. CB   Remark: Epileptologists and mental health providers should discuss the diagnosis with the patient during the initial assessment period. CB   Remark: Center care providers should remain active in the ongoing care of patients with PNEE to minimize recurrent hospitalization and avoid confusion   regarding diagnosis. CB

Patients with special needs 39. Recommendation: All epilepsy centers should be prepared to care for patients with special needs including those with motor, sensory, and behavioral disorders, and intellectual and developmental disabilities. CB   Remark: Centers should have policies guiding the accommodation of patients with intellectual and developmental disabilities, including preparation for   and administration of epilepsy-related procedures. CB   Remark: Pediatric epilepsy centers should have trained child life specialists to help children and their caregivers in preparation for and administration of   epilepsy-related procedures. CB

PWE and childbearing potential 40. Recommendation: All epilepsy centers should provide counseling to PWE and childbearing potential on the impact of epilepsy and antiseizure medications on contraception and pregnancy. CB   Remark: Counseling should include the importance of folate supplementation for PWE and childbearing potential. CB

Patient education 41. Recommendation: All epilepsy centers should provide epilepsy-specific patient educational materials and referrals to support groups and community resources. CB   Remark: Educational materials should cover the broad spectrum of needs and include materials for people with new-onset epilepsy, people affected by   common comorbidities of epilepsy, and people with complex needs including those contemplating epilepsy surgery. CB

42 Recommendation: All epilepsy centers should provide patients with individualized written seizure safety management plans including seizure precautions, recognition, triggers, first aid, and rescue medications. CB

43. Recommendation: All epilepsy centers should provide PWE and caregivers with information on the risks of SUDEP and life-threatening events related to epilepsy. CB

Social determinants of health and interpretation services 44. Recommendation: All epilepsy centers should assess the impact of social determinants of health on patients and offer referral for support services when necessary. CB

45. Recommendation: Centers should offer interpretation services and written translation for patients and caregivers with language barriers. CB   Remark: Educational materials should be available in English and in other frequently used languages in the center's community. CB   Remark: Patient-specific materials, such as patient care instructions and seizure action plans, should be written in the patient's preferred language, or if not   available, interpreter services should be used to verbally communicate information to patients. CB

Psychosocial services 46. Recommendation: All centers should regularly screen patients for behavioral health comorbidities and offer referrals for treatment when necessary. CB   Remark: All centers should screen for depression and anxiety and utilize standardized screening tools if appropriate. CB   Remark: All centers should have established referral processes for behavioral health counseling and psychiatric services. CB    Remark: Centers serving children should screen for learning and behavioral concerns and attention deficit disorders. CB    Remark: Centers serving children should have trained child life specialists to help children and their caregivers cope with the stress of chronic illness. CB

47. Recommendation: All epilepsy centers should have a licensed clinical social worker on staff to assess and address, as appropriate, the disproportionate impact epilepsy has on educational, social, emotional, and vocational needs. CB   Remark: Although primary assessment of educational needs is usually performed by the school system or by a neuropsychologist, a social worker plays an   important role in addressing how children and their caregivers can access school services. CB

Dietary therapy services 48. Recommendation: All epilepsy centers that offer dietary therapy should have a registered dietitian with expertise in managing dietary therapies. CB

49. Recommendation: Pediatric epilepsy centers should have a ketogenic diet program for treatment of epilepsy within the center or by referral, which must include both an epileptologist and a registered dietitian. CB   Remark: Centers need a protocol for initiation of the ketogenic diet and for monitoring for adverse events. CB   Remark: Centers may utilize advanced practice providers and nurses trained in the ketogenic diet to manage patients. CB

Rehabilitation services 50. Recommendation: All centers should have a protocol addressing regular screening for neurodevelopmental and cognitive comorbidities in patients with epilepsy, with referrals for appropriate rehabilitation services. CB   Remark: Pediatric epilepsy centers should screen for developmental disorders and speech and language disorders for patients of all ages; they should   screen school-aged children for learning and attention disorders. CB   Remark: Adult epilepsy centers should screen all patients for cognitive and vocational issues. CB

51. Recommendation: All centers should provide physical, occupational, and speech therapy services within the center or by referral. CB   Remark: All centers should provide services for cognitive and language disorders, common comorbidities of epilepsy, as part of comprehensive care. CB   Remark: Centers should offer referrals for physical medicine and rehabilitation consultation when needed. CB

52. Recommendation: All epilepsy centers should anticipate potential rehabilitative needs for patients undergoing epilepsy surgery and include appropriate preoperative assessment to plan for presurgical and postsurgical therapy services. CB   Remark: For patients undergoing epilepsy surgery, centers should provide physical, occupational, and speech therapy services as part of their presurgical   and postsurgical care. CB   Remark: Centers should utilize presurgical neuropsychological testing to direct or guide planning for presurgical and postsurgical therapy services. CB

Abbreviations: CB = consensus based; PNEE = psychogenic nonepileptic event; PWE = people with epilepsy; SUDEP = sudden unexplained death in epilepsy.