Abstract
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
Highlights
Medical ketogenic diets (KDs) are a group of high fat, adequate protein, and very low carbohydrate regimens comprising five variants designed to induce ketosis: the classicalKD [1], medium chain triglyceride KD (MCT KD) [2], modified Atkins diet (MAD) [3], low glycaemic index treatment (LGIT) [4], and the modified ketogenic diet (MKD) [5]
Dietitians were asked to categorise patients depending on feeding route, KD variant, and, if fed via a feeding tube, by type of ketogenic enteral feed (KEF) received and to give their best estimate of the average number of hours spent as an individual dietitian on a per-patient basis during the KD patient journey of pre-diet preparation, initial 3-month trial, 2-year follow-up period, follow-up beyond 2 years, and diet discontinuation
In the UK, a median of 162 h of care contact time is estimated to be spent per dietitian, per patient with drug-resistant epilepsy (DRE) during the KD patient journey
Summary
KD [1], medium chain triglyceride KD (MCT KD) [2], modified Atkins diet (MAD) [3], low glycaemic index treatment (LGIT) [4], and the modified ketogenic diet (MKD) [5]. Regimens are demanding of the skill and expertise of the dietitian due to their inherent complexity, the need for individualised dietary calculation (to take into consideration clinical condition, age, feeding ability, nutritional requirements, educational status, and socio-economic circumstances), meal planning and recipe development, regular patient/caregiver contact, and liaison with other healthcare professionals. Attrition from KDs occurs (mainly due to poor diet tolerance or lack of efficacy) [7], and this will impact diet duration, recommendations are that KDs for DRE are discontinued if unsuccessful after a minimum of three months and after two years in patients where they have been efficacious [6]. There is no maximum duration for the use of KDs in DRE, and
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