A Systematic Review of the Quality of Life for Families Supporting a Child Consuming the Ketogenic Diet for Seizure Reduction

The ketogenic diet (KD) is a nonpharmacologic treatment to reduce seizures with moderate to high success in pediatric patients with intractable epilepsy. Initiated in hospital, parents continue the treatment at home ensuring the ratio of high fat to low carbohydrate/protein is maintained to achieve metabolic ketosis. We conducted a systematic review to examine the quality of life (QoL) for families with a child using the KD for the reduction in epileptic seizures. A systematic review of the literature was conducted from 2007–2014 using key terms and combinations of: “epilepsy,” “ketogenic diet,” “children,” “family,” and “quality of life.” We accessed CINAHL, Medline, PubMed, and PsycINFO. After removing duplicates, we screened 598 papers by title and abstract. Articles comparing alternate diets such as the Atkins diet to the KD, or those focusing on the KD and societal costs, were excluded. Eighteen articles remained, including 7 intervention studies (randomized controlled trial and quasiexperimental), 7 descriptive studies (retrospective), 2 observational studies, and 2 case studies. Most participants were diagnosed with epilepsy at the age of 5 y, and had a trial of antiepileptic drugs (AEDs) and had been using the KD after discharge from the hospital. QoL was infrequently reported as a primary variable and was defined in a variety of ways. We found recurring themes that could affect QoL: efficacy of seizure reduction, nutritional status, child growth and development, and child and family psychosocial impact. The dominant psychological factor was the need for counseling for parents and clear expectations on expected outcomes. Nonadherence and dropout rates were frequent, but unfortunately the reasons and timing were not well documented, and some of these could be associated with QoL. The success of the KD in seizure reduction addressed a primary parental concern. Further research should address KD adherence and dropout rates, and investigate factors of quality of life.