Abstracts

Rationale: The ketogenic diet (KD) can be an effective therapy for children with refractory epilepsy; however it presents unique challenges for participants and caregivers. Psychosocial stressors may impact diet outcomes and compliance.   It is important to recognize these factors when considering the ketogenic diet as adjunctive treatment.  Pre-clinic psychosocial assessments conducted by the KD team social worker at Boston Children’s Hospital (BCH), are an important source of information on family strengths, supports, and barriers to diet initiation and ongoing maintenance for the KD team.   This retrospective study describes stressors identified by patient and caregivers seen for initial consultation with the KD program and their relationship to the subsequent ability to successfully initiate and remain on diet for the duration necessary to assess efficacy and tolerability.  Methods: Records of one-hundred twenty (120) patients that initiated KD and that were assessed prior to initial consultation were reviewed over a period of five years.  A total of one-hundred fifteen (115) identified a stressor during assessment.  Data regarding nature of stressors, diet outcomes, and clinic notes detailing instances of non-compliance were examined.  Diet outcomes were categorized either as success, or failure.  For this study success was defined as maintenance of diet and ketosis to point of assessment of efficacy (12-16 weeks) or to decision to terminate early due to intolerable medical adverse effect/exacerbation of seizures.  Failure is defined as discontinuation of diet for any reason other than above, prior to assessment of efficacy.   Compliance variables were defined in binary fashion as: “compliant” vs “non-compliant”. Non-compliant includes   > 1, or repeated instances of breach of ketogenic diet protocol, e.g. missed appointments; failure to obtain ordered labs; non-compliance with diet procedures; dietary breach; medication changes without instruction.   Compliant cases were those that followed the diet protocol with 0-1 instance of breach of protocol.  Results: Stressors were grouped into the following categories: caregiver/family stress (160);  patient behavior/mental health (30);  education (18); financial/insurance (66);  health system/government agency navigation (6); cultural/language/immigration status (13); legal (6); none identified (5.)   Of the 120 patients initiated, eleven (11) were described as failures due early termination of diet for non-medical reasons and thirty seven (37) were listed as non-compliant.   Conclusions: A variety of stressors were experienced by patients and caregivers, however instances of failure were low ( < 10%.)   Rates of non-compliance were relatively high at nearly 31%.   The significance of these findings point to the need for future prospective studies on the impact of stressors on diet success and compliance.   Other planned studies include: a prospective analysis of specific social work and KD team member interventions aimed at reducing non-compliance and any subsequent effect on diet success/failure.   Another proposed study will examine whether instances of non-compliance contributed to delayed onset or loss of ketosis. Funding: None