Keto-on-the-Clock: A Survey of Dietetic Care Contact Time Taken to Provide Ketogenic Diets for Drug-Resistant Epilepsy in the UK

Medical ketogenic diets (KDs) are effective yet resource-intensive treatment options for drug-resistant epilepsy (DRE). We investigated dietetic care contact time, as no recent data exist. An online survey was circulated to ketogenic dietitians in the UK and Ireland. Data were collected considering feeding route, KD variant and type of ketogenic enteral feed (KEF), and the estimated number of hours spent on patient-related activities during the patient journey. Fifteen dietitians representing nine KD centres responded. Of 335 patients, 267 (80%) were 18 years old or under. Dietitians spent a median of 162 h (IQR 54) of care contact time per patient of which a median of 48% (IQR 6) was direct contact. Most time was required for the classical KD taken orally (median 193 h; IQR 213) as a combined tube and oral intake (median 211 h; IQR 172) or a blended food KEF (median 189 h; IQR 148). Care contact time per month was higher for all KDs during the three-month initial trial compared to the two-year follow-up stage. Patients and caregivers with characteristics such as learning or language difficulties were identified as taking longer. Twelve out of fifteen (80%) respondents managed patients following the KD for more than two years, requiring an estimated median contact care time of 2 h (IQR 2) per patient per month. Ten out of fifteen (67%) reported insufficient official hours for dietetic activities. Our small survey gives insight into estimated dietetic care contact time, with potential application for KD provision and service delivery     

Dietetic service provision for burn care in the United Kingdom: are nutrition support standards being met?

Background:  Catabolism and lean body mass losses in severe burn injury present an extreme challenge to the dietitian. A high level of nutritional intervention is often required, but service levels have not been described in the UK. This study aimed to identify levels of current dietetic services with respect to burns and to assess adequacy against existing nutrition support standards.
Methods:  A postal survey of 34 UK dietetic departments known to provide care to burned adult and paediatric admissions was undertaken. Data were collected on burns settings, hospital service characteristics, staffing and caseload issues, and absence cover. Comparison was made between funding and activity to National Health Service standards for the nutritional care of inpatients.
Results:  The response rate was 71% and data were analysed for 20 departments Clinical settings were either burn units or plastic surgery wards. Dietetic care was provided to critically ill burned patients in 16 hospitals. Most hospitals had no dietetic funding assigned for burn care. The funding deficit for critical care compared to recommendations was 5.9 full-time equivalents and no individual hospital met funding standards. Thirty-seven percent of dietitians were unable to provide daily follow up for critically ill patients. Absence cover was limited in 60% of cases. Approximately one-third of dietitians were members of a nutrition support team.
Conclusions:  Compared to national guidelines for nutrition support, deficiencies of dietetic service provision exist within UK burns settings. This is further reinforced when practice is compared with existing multi-professional burns management standards.     

A prospective study: growth and nutritional status of children treated with the ketogenic diet

OBJECTIVE: To assess the nutritional status of children treated with the classic and medium-chain triglyceride (MCT) ketogenic diets. DESIGN: A prospective, nonrandomized study design was used to measure nutrient intakes, growth, and biochemical indexes of children, age 1 to 16 years, with intractable epilepsy before and after 4 months' treatment with the classic and MCT ketogenic diets. None of the children had been on earlier dietary regimens. SUBJECTS: Of 58 children asked to participate in the study between September 1998 and July 2000, consent was obtained for 30 children. Fourteen children on the classic diet and 11 children on the MCT diet completed the study (83% completed). Statistical analysis performed Paired t tests were done on anthropometric and biochemical indexes. Nutrient intakes were compared with Dietary Reference Intakes (DRIs). RESULTS: Both groups had statistically significant height increases of 2 to 3 cm (P<.05), but did not have significant increases in height/age percentiles. Weight percentiles decreased by approximately 10 percentiles for both diets; P=.043 for classic diet and.051 for MCT diet. Nutrient intakes from the diet and vitamin and mineral supplements met the DRIs except for phosphorus (both diets) and folate (classic diet). All biochemical indexes, including albumin, remained within the normal range. For the MCT diet, there was a 0.7 decrease in the ratio of total cholesterol to high-density lipoprotein ratios (P<.0009) at 4 months. APPLICATIONS: When treating children on a ketogenic diet, clinicians should recommend adequate intake of energy and protein, a higher proportion of unsaturated to saturated dietary fats, and consider vitamin and mineral supplements.     

Efficacy of dietary treatments for epilepsy

The ketogenic diet (KD) is a high fat, restricted carbohydrate regime that has been used as a treatment for seizures since the 1920s, when it was designed to induce a similar metabolic response to fasting. A modification of this early classical version of the KD was introduced in the 1970s using medium chain triglycerides as an alternative fat source. More recently, two alternative, less‐restrictive dietary treatments have been developed: the modified Atkins diet and the low glycaemic index diet. There are many case reports and observational studies reporting successful use of the KD, and a growing number of studies reporting similar success with the modified Atkins protocol. A recent randomised controlled trial has shown a significant benefit of the KD compared to no change in treatment. The use of these dietary therapies in the UK is supported by literature evidence, although often is limited by a lack of resources; increasing awareness and knowledge is fundamental to ensure availability for those individuals with intractable epilepsy who may benefit from them.     

Development and evaluation of a ketogenic diet program

Use of the ketogenic diet for seizure control in children with epilepsy has seen a recent resurgence. Little cost-benefit analysis of this therapy has been published. Lack of diet standardization and method for evaluation of diet efficacy makes the decision to implement this diet therapy problematic for dietetics practitioners. In 1995, a 3-year trial ketogenic diet program was implemented; the decision on whether to continue the program depended on patient outcomes and financial implications to the institution. The program initiation process involved development of a protocol encompassing inpatient and outpatient care, patient/caregiver education materials, and a parent/caregiver satisfaction survey for evaluation of subjective responses to therapy. The program was researched and developed by registered dietitians and required approximately 55 hours of labor over a period of 5 months. Nutrition management averaged 16 hours per patient. Available cost data revealed 83% reimbursement of hospital charges and 99% reimbursement of inpatient costs. Seizure reduction and/or improved behavior occurred in 6 of 11 (55%) patients. Although program development and patient-care management was labor intensive, results have been encouraging based on reduction in seizures and behavioral improvements in patients and parent/caregiver satisfaction. J Am Diet Assoc. 1999;99:1554–1558.     

Breath acetone is a reliable indicator of ketosis in adults consuming ketogenic meals

BACKGROUND: Ketogenic diets are used therapeutically to treat intractable seizures. Clinically, it appears that the maintenance of ketosis is crucial to the efficacy of the diet in ameliorating seizures. To understand how ketosis and seizure protection are related, a reliable, noninvasive measure of ketosis that can be performed frequently with minimal discomfort is needed. OBJECTIVE: The objective was to determine which index, breath acetone or urinary acetoacetate, is more strongly related to the plasma ketones acetoacetate and beta-hydroxybutyrate. DESIGN: After fasting overnight for 12 h, 12 healthy adults consumed 4 ketogenic meals over 12 h. Blood, breath, and urine samples were collected hourly. Blood was analyzed for plasma acetoacetate and beta-hydroxybutyrate, breath for acetone, and urine for acetoacetate. RESULTS: By the end of the 12-h dietary treatment, plasma acetoacetate, plasma beta-hydroxybutyrate, and breath acetone had increased 3.5-fold, whereas urinary acetoacetate increased 13-fold when measured enzymatically and 25-fold when measured with urinary ketone dipsticks. Plasma acetoacetate was best predicted by breath acetone (R(2) = 0.70, P < 0.0001). Plasma beta-hydroxybutyrate was equally predicted by breath acetone and urinary acetoacetate (R(2) = 0.54, P = 0.0040). CONCLUSIONS: Breath acetone is as good a predictor of ketosis as is urinary acetoacetate. Breath acetone analysis is noninvasive and can be performed frequently with minimal discomfort to patients. As an indicator of ketosis in epilepsy patients consuming a ketogenic diet, breath acetone may be useful for understanding the mechanism of the diet, elucidating the importance of ketosis in seizure protection, and ultimately, enhancing the efficacy of the diet by improving patient monitoring.     

Communication skills for behaviour change in dietetic consultations

Background: Both the UK’s National Health Service (NHS) and the National Institute of health and Clinical Excellence (NICE) have recommended increased training for health professionals in communication skills. There is evidence to suggest that communication skills are important in helping people to change health‐related behaviour, which is a key role for dietitians. This study investigated the views of UK dietitians about their training needs and experience in relation to communication skills in dietetic practice. Methods: In October 2007, a cross‐sectional survey was mailed to all British Dietetic Association members (n = 6013). The survey gathered quantitative data and free‐text comments to ascertain the level, type and effect of communication skills training received by dietitians at both the pre‐ and post‐registration level. Results: There were 1158 respondents; a response rate of 19.3%. Ninety‐eight percent (n = 1117) rated communication skills as either very or extremely important in client consultations. Post‐registration training had been undertaken by 73% (n = 904). Of these, over 90% of respondents perceived that post‐registration training had led to improvements in their relationships with patients, their confidence in client interviews and their ability to cope with challenging clients. However, 248 (21.4%) felt time keeping in interviews had worsened. Lack of time for client interviews was also the most commonly identified barrier (19%, n = 216) to implementing the skills. Conclusions: This study has explored an important and under‐researched area. Respondents strongly endorsed the importance of good communication skills and the benefits of post‐registration training in this area. Some felt that good communication was time consuming but others felt that time management had improved. Further research and training is required to support the implementation of these skills into dietetic practice.     

The modified Atkins diet for intractable epilepsy may be associated with late-onset egg-induced anaphylactic reaction: a case report

The modified Atkins diet is a therapeutic option for children with intractable epilepsy. It is less restrictive than the traditional ketogenic diet, with ∼60% of calories from fat sources. We describe a 6-y-old boy with intractable epilepsy treated with the modified Atkins diet who presented to the emergency department with first-time anaphylactic reaction to egg. Symptoms of urticaria and angioedema, shortness of breath, wheezing, and cyanosis developed several minutes after he ate a hard-boiled egg. His history was remarkable for asthma, but no food allergies were documented. The anaphylactic reaction appeared after 6 mo of treatment with the modified Atkins diet (including 10-15 eggs daily), which ameliorated his seizures, and was preceded by streptococcal pharyngitis. Laboratory workup revealed specific immunoglobulin E antibodies to egg. This is the first report of new-onset egg allergy in a child, probably triggered by the high egg content of the modified Atkins diet. The risk of egg allergy should be kept in mind when treating epileptic children with the modified Atkins diet, especially those with comorbid asthma.     

A survey of provision of dietetic services for coeliac disease in the UK

BACKGROUND: Management guidelines for care of coeliac patients published by the British Society of Gastroenterology (BSG), 2002 recommend that patients should see a dietitian at diagnosis and at least at annual review. In the absence of information on dietetic provision in coeliac disease management in the UK and with surveys in other countries suggesting that patients with coeliac disease gain most information from coeliac support groups (Green et al., 2001), Coeliac UK set out to investigate dietetic services for coeliac patients in the UK. METHODS: Questionnaires were sent to dietetic departments in the UK via the Regional Managers Group of the British Dietetic Association (BDA) by email. The questionnaires were in two parts, the first was completed by the dietetic manager and the second by the dietitian with the main responsibility for the management of coeliac patients within the department. RESULTS: Over one-quarter of departments reported allocating a maximum of 1 h of dietitians' time per month per 100,000 population to seeing coeliac patients. More hours were allocated to coeliac patients in departments where dietitians had attended coeliac disease training, where dietitians were professional members of Coeliac UK or where coeliac patient care was undertaken by a multi-disciplinary team. CONCLUSION: There is wide variation in dietetic provision for diagnosed coeliac patients in the UK. The Coeliac UK survey suggests that the current level of dietetic provision is in the region of one-third of what is required according to the BSG management guidelines (British Society of Gastroenterology (BSG), 2002) to provide diagnosed coeliacs with only basic support and annual review.     

Survey of outpatient diet counselling services in British Columbia hospitals.

A fall 1985 mail survey of British Columbia (B.C.) hospitals offering outpatient diet counselling services documented a diversity of policies and procedures regarding both structural factors (i.e. personnel and facilities) and generic factors (i.e. referrals accepted and services provided). Results indicate a need to address many issues in outpatient dietetics in B.C. with a view to implementing changes and an ongoing program of evaluation, to ensure cost-effectiveness. Implications inferred from these results may be of value to dietitians elsewhere in Canada faced with the challenges of increasing competition for scarce health care resources.     

Evaluation of E-Health Applications for Paediatric Patients with Refractory Epilepsy and Maintained on Ketogenic Diet

E-health technologies improve healthcare quality and disease management. The aim of this study was to develop a ketogenic diet management app as well as a website about this dietary treatment and to evaluate the benefits of giving caregivers access to various web materials designed for paediatric patients with refractory epilepsy. Forty families participated in the questionnaire survey, from January 2016 to March 2016. All caregivers were exposed to paper-based materials about the ketogenic diet, whereas only 22 received the app, called KetApp, and videos produced by dieticians. Caregivers with free access to web materials were more satisfied than the others with the informative material provided by the centre (p ≤ 0.001, Mann–Whitney test). Indeed, they showed a better attitude towards treatment, and they became more aware of dietary management in comparison to the control group (p ≤ 0.001). Moreover, caregivers provided with web materials were stimulated to pursue the treatment (p = 0.002) and to introduce it to their children and other people (p = 0.001). Additionally, caregivers supplied with web materials were more willing to help other families in choosing the ketogenic diet (p = 0.004). Overall, these findings indicate that web materials are beneficial for caregivers of paediatric patients with refractory epilepsy in our centres. Thus, the use of e-health applications could be a promising tool in the daily aspects of ketogenic diet management, and it is especially of value in the attempt to start or maintain the diet during the ongoing COVID-19 pandemic crisis.     

Implementing A Ketogenic Diet Based on Medium-chain Triglyceride Oil in Pediatric Patients with Cancer

Traditionally, a ketogenic diet is given to drug-resistant children with epilepsy to improve seizure control. Inducing a ketogenic state in patients with cancer may be a useful adjunct to cancer treatment by affecting tumor glucose metabolism and growth while maintaining the patient's nutritional status. A ketogenic diet consisting of 60% medium-chain triglyceride (MCT) oil, 20% protein, 10% carbohydrate, and 10% other dietary fats was provided to a select group of pediatric patients with advanced-stage cancer to test the effects of dietary-induced ketosis on tumor glucose metabolism. Issues of tolerance and compliance for patients consuming an oral diet (consisting of normal table foods and daily MCT oil “shakes”) and for patients receiving an enteral formula are reviewed. Preliminary use of the MCT oil-based diet suggests a potential in pediatric patients with cancer. J Am Diet Assoc. 1995; 95:693-697.     

The ketogenic diet in children with epilepsy

Children with epilepsy, especially those facing intractable seizures, experience a great impact on the quality of their lives. Effective treatment is essential, and although new anti-epileptic drugs have shown an improved profile of action, still a substantial number of children look for more efficacious ways of treatment that are far away from potential toxicity and ineffectiveness. The ketogenic diet is a dietary therapy for epileptic children based on manipulation of metabolism principles and brain energetics. This regimen aims to produce a controlled ketonaemia through excessive dietary fat intake, little carbohydrates and adequate (for growth) protein. The present paper is a review of previous and current papers regarding the proposed mechanisms of the ketogenic diet's action, and the efficacy of the regimen on epileptic children. Unfortunately, a few small studies in sample size and duration tried to evaluate the potential risks of this regimen and their results were rather inconclusive. Further research needs to be done in order for the exact mechanism of the ketogenic diet to be clarified which will help to improve the diet's application, especially for vulnerable epileptic children as far as their growth is concerned.     

Consumption of a low-carbohydrate and high-fat diet (the ketogenic diet) exaggerates biotin deficiency in mice

ObjectiveBiotin is a water-soluble vitamin that acts as a cofactor for several carboxylases. The ketogenic diet, a low-carbohydrate, high-fat diet, is used to treat drug-resistant epilepsy and promote weight loss. In Japan, the infant version of the ketogenic diet is known as the “ketone formula.” However, as the special infant formulas used in Japan, including the ketone formula, do not contain sufficient amounts of biotin, biotin deficiency can develop in infants who consume the ketone formula. Therefore, the aim of this study was to evaluate the effects of the ketogenic diet on biotin status in mice.MethodsMale mice (N = 32) were divided into the following groups: control diet group, biotin-deficient (BD) diet group, ketogenic control diet group, and ketogenic biotin-deficient (KBD) diet group. Eight mice were used in each group.ResultsAt 9 wk, the typical symptoms of biotin deficiency such as hair loss and dermatitis had only developed in the KBD diet group. The total protein expression level of biotin-dependent carboxylases and the total tissue biotin content were significantly decreased in the KBD and BD diet groups. However, these changes were more severe in the KBD diet group.ConclusionThese findings demonstrated that the ketogenic diet increases biotin bioavailability and consumption, and hence, promotes energy production by gluconeogenesis and branched-chain amino acid metabolism, which results in exaggerated biotin deficiency in biotin-deficient mice. Therefore, biotin supplementation is important for mice that consume the ketogenic diet. It is suggested that individuals that consume the ketogenic diet have an increased biotin requirement.     

Dietetic Management of Adults with Phenylketonuria (PKU) in the UK: A Care Consensus Document

There is an increasing number of adults and elderly patients with phenylketonuria (PKU) who are either early, late treated, or untreated. The principal treatment is a phenylalanine-restricted diet. There is no established UK training for dietitians who work with adults within the specialty of Inherited Metabolic Disorders (IMDs), including PKU. To address this, a group of experienced dietitians specializing in IMDs created a standard operating procedure (SOP) on the dietetic management of adults with PKU to promote equity of care in IMD dietetic services and to support service provision across the UK. The group met virtually over a period of 12 months until they reached 100% consensus on the SOP content. Areas of limited evidence included optimal blood phenylalanine reporting times to patients, protein requirements in older adults, management of weight and obesity, and management of disordered eating and eating disorders. The SOP does not include guidance on maternal PKU management. The SOP can be used as a tool for training dietitians new to the specialty and to raise the standard of education and care for patients with PKU in the UK.     

Changes in growth and seizure reduction in children on the ketogenic diet as a treatment for intractable epilepsy

OBJECTIVE: To assess growth and seizure reduction in epileptic children using the ketogenic diet as a treatment for intractable epilepsy. DESIGN: A retrospective chart review was designed to evaluate urinary ketone levels, height and weight z scores and percentiles, and seizure reduction. Data were collected at baseline and at 6 and 12 months. SUBJECTS/SETTINGS: Fifty-seven subjects, ages 1 to 26 years old, started the ketogenic diet at Rush University Medical Center between August 1995 and December 2001. Thirty-nine subjects stayed on the diet for 6 months, and five more were lost by the 12th month of follow-up. Statistical analysis Mann-Whitney U tests assessed differences between male and female subjects and between subjects with high ketosis and moderate ketosis. Friedman tests followed by Wilcoxon sign rank tests assessed the significance of changes in growth at baseline and at 6 and 12 months. Associations between seizure reduction and growth and urinary ketone levels were determined using chi 2 tests. A binary logistic regression model identified potential predictors of growth and seizure reduction. RESULTS: Height-for-age z scores significantly decreased ( P < or =.0005) from -0.30+/-1.19 to -0.99+/-1.13 among subjects on the diet for 12 months. Subjects with high ketosis (80 to 160 mg/dL) experienced a significant decrease ( P < or =.0005) in height-for-age z scores from -0.45+/-1.28 to -1.1+/-1.23, whereas subjects with moderate ketosis did not. Observed percent seizure reduction was similar to those of other published studies. CONCLUSIONS: Subjects on the ketogenic diet showed a delay in growth. More research is needed to evaluate the relationship between ketosis and growth.     

The ketogenic diet for the treatment of epilepsy: a challenge for nutritional neuroscientists

The ketogenic diet (KD) is a high-fat, low-carbohydrate, adequate-protein diet that has been used for more than eight decades for the treatment of refractory epilepsy in children. Despite this long history, the mechanisms by which the KD exerts its anti-seizure action are not fully understood. Questions remain regarding several aspects of KD action, including its effects on brain biochemistry and energetics, neuronal membrane function and cellular network behavior. With the explosion of the KD use in the last 10 years, it is now imperative that we understand these factors in greater detail, in order to optimize the formulation, administration and fine-tuning of the diet. This review discusses what is known and what remains to be learned about the KD, with emphasis on clinical questions that can be approached in the laboratory. We encourage scientists with a primary interest in nutritional neuroscience to join with those of us in the epilepsy research community to address these urgent questions, for the benefit of children ravaged by intractable seizures.     

The Ketogenic Diet for the Treatment of Epilepsy: A Challenge for Nutritional Neuroscientists

Abstract

The ketogenic diet (KD) is a high-fat, low-carbohydrate, adequate-protein diet that has been used for more than eight decades for the treatment of refractory epilepsy in children. Despite this long history, the mechanisms by which the KD exerts its anti-seizure action are not fully understood. Questions remain regarding several aspects of KD action, including its effects on brain biochemistry and energetics, neuronal membrane function and cellular network behavior. With the explosion of the KD use in the last 10 years, it is now imperative that we understand these factors in greater detail, in order to optimize the formulation, administration and fine-tuning of the diet. This review discusses what is known and what remains to be learned about the KD, with emphasis on clinical questions that can be approached in the laboratory. We encourage scientists with a primary interest in nutritional neuroscience to join with those of us in the epilepsy research community to address these urgent questions, for the benefit of children ravaged by intractable seizures.     

Medical costs are reduced when children with intractable epilepsy are successfully treated with the ketogenic diet

The ketogenic diet is used for children with drug refractory epilepsies. Although this diet was developed early in the 20th century, its use was infrequent until recently. One of the concerns about the ketogenic diet is the cost of initiating the diet. The process generally involves an inpatient visit that can last several days. In this study, the health care costs for 15 children with drug refractory epilepsy who received their care at Vanderbilt University Medical Center were compared for the period of time 6 to 12 months before they began the ketogenic diet and 6 to 12 months after they began the ketogenic diet. All comparisons within each child were done on the same amount of time before and after initiation of the diet. Total costs affiliated with care for the 15 children were: $352,820.20 for the prediet period, $41,221.91 for the diet initiation, and $149,436.86 for the postdiet-initiation period. We conclude that successful maintenance on the ketogenic diet provides a substantial financial benefit.