Abstracts

Rationale: The Ketogenic Diet (KD) though effective, imposes a significant lifestyle change for the child and family. Literature reports of significant drop out rates of >40%. Reasons include poor parental and/or patient coping, poor compliance, lack of support, side effects and lack of efficacy. Hypothesis: Multidisciplinary Psychosocial Support (MPS) to the family reduces the chance of drop out rate in KD program. Objective: To determine whether MPS reduces the 1 year drop out rate in children treated with KD for intractable epilepsyMethods: Inclusion Criteria: We studied the children (<18 years) initiated on the KD at McMaster Children's Hospital for intractable epilepsy. Group A- Children initiated on the KD from Jan 2001 - Jan 2003. Group B- Children initiated on the KD from Jan 2004 - Jan 2006. Intervention: A registered dietitian (RD), child life specialist (CLS) and social worker (SW) formed the core MPS team since Jan 2004. Prior to this, there was no dedicated CLS or SW. MPS included: 1) RD created menus and provided ongoing education & support to parents; 2) CLS assessed, educated, & supported patients & siblings to increase coping & adjustment; 3) SW assessed and supported parents to increase coping and empowerment; 4) KD parent support group every 8 weeks. Children were followed up for 1 year or till they dropped out (which ever was earlier) Outcome measure: 1 year drop out rate in group A & B Results: Group A: 15 patients (ages: 0.7-18.4 years; mean 8.3 years). 74% (11) had >50% seizure control (27% seizure free, 4). One year drop out was 60% (9) due to poor seizure control (13%, 2) and, lack of psychosocial support (PS) in 47% (7). Group B: 26 patients (ages 0.8-17.9 years; mean 7.8 yrs). 62% (16) had > 50% seizure control (27% seizure free, 7). By one year 42% (11) dropped out due to poor seizure control (19%, 5) and lack of PS (23%, 6). Drop out due to lack of PS was higher in Group A (p=0.059, X²). Reasons other than lack of efficacy and side effects were presumed to be 'psychosocial' Psychosocial reasons for drop out included: 1) Patient’s/sibling’s difficulties with coping in social/family activities 2) Inability of parent to support patient due to their difficulty to cope 3) Lack of patient understanding of purpose of KD 4) Patient feeling diet is too restricting/regimented 5) Negative impact of KD on family system and family quality of life. Conclusions: We presume from the results that MPS to families is effective in reducing 1-year drop out rate (due to psychosocial reasons) of the KD therapy by 24%. This difference is clinically significant, but achieved only near statistical significance due to small sample size. The MPS allows for children and their families to have a better opportunity to benefit from the KD, which may translate into overall improved quality of life. We strongly suggest that a family centered approach that includes a CLS and SW be utilized when selecting and supporting KD families.