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

Abstract

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.

Social and Economic Challenges to Implementing the Ketogenic Diet: A Case Series

“…12 The most common reasons for dropout include gastrointestinal side effects, dislike of the diet, and nonacceptance of the diet by family members, although the relative proportions of these reasons are not reported. [12][13][14][15] Notably, little research has examined the factors specific to economically disadvantaged patient groups that might further impede KD implementation. One concern is the necessary consumption of large amounts of high-fat ingredients at the expense of low-cost staples: according to de Kinderen et al, KD implementation for a single patient in 2016 incurred an additional $5,210 to $7,865 of yearly food expenditures in 2016.…”

<p>Current Perspectives On The Role Of The Ketogenic Diet In Epilepsy Management</p>

“…These intangible stressors and gains reflected through seizure control and reduction of anti-epileptic drugs may ultimately decide the perceived quality of life of the immediate family members. Poelzer et al conducted a systematic review of literature from 2007 to 2014 pertaining to children on various forms of KD to evaluate the effect of KD on the QoL of their immediate family members 58. It emerged that no study directly addressed the issue of QoL 58.…”

“…Poelzer et al conducted a systematic review of literature from 2007 to 2014 pertaining to children on various forms of KD to evaluate the effect of KD on the QoL of their immediate family members 58. It emerged that no study directly addressed the issue of QoL 58. Surrogate markers like poor adherence to KD and high dropout rates may be indicative of poor QoL 58.…”

“…It emerged that no study directly addressed the issue of QoL 58. Surrogate markers like poor adherence to KD and high dropout rates may be indicative of poor QoL 58. Therefore, improvement of QoL may be ensured by pre-counseling and regular interaction between parents and health-care providers 58.…”

“…Surrogate markers like poor adherence to KD and high dropout rates may be indicative of poor QoL 58. Therefore, improvement of QoL may be ensured by pre-counseling and regular interaction between parents and health-care providers 58. It is also a case in point that studies need to fathom the effect of KD on the QoL of patients as well as their family members.…”