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

Nutrients ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 2484
Author(s):  
Bridget Lambert ◽  
Kathryn Lightfoot ◽  
Rachel Meskell ◽  
Victoria J. Whiteley ◽  
Kirsty J. Martin-McGill ◽  
...  

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

Nutrients ◽  
2021 ◽  
Vol 13 (7) ◽  
pp. 2307
Author(s):  
Cherubino Di Lorenzo ◽  
Giovanna Ballerini ◽  
Piero Barbanti ◽  
Andrea Bernardini ◽  
Giacomo D’Arrigo ◽  
...  

Headaches are among the most prevalent and disabling neurologic disorders and there are several unmet needs as current pharmacological options are inadequate in treating patients with chronic headache, and a growing interest focuses on nutritional approaches as non-pharmacological treatments. Among these, the largest body of evidence supports the use of the ketogenic diet (KD). Exactly 100 years ago, KD was first used to treat drug-resistant epilepsy, but subsequent applications of this diet also involved other neurological disorders. Evidence of KD effectiveness in migraine emerged in 1928, but in the last several year’s different groups of researchers and clinicians began utilizing this therapeutic option to treat patients with drug-resistant migraine, cluster headache, and/or headache comorbid with metabolic syndrome. Here we describe the existing evidence supporting the potential benefits of KDs in the management of headaches, explore the potential mechanisms of action involved in the efficacy in-depth, and synthesize results of working meetings of an Italian panel of experts on this topic. The aim of the working group was to create a clinical recommendation on indications and optimal clinical practice to treat patients with headaches using KDs. The results we present here are designed to advance the knowledge and application of KDs in the treatment of headaches.


2020 ◽  
Vol 7 (1) ◽  
pp. e000498 ◽  
Author(s):  
Dirk Wagner ◽  
Jakko van Ingen ◽  
Roald van der Laan ◽  
Marco Obradovic

BackgroundPatients with bronchiectasis are at increased risk of developing non-tuberculous mycobacteria lung disease (NTM-LD), and published guidelines recommend regular testing for NTM infection in this patient population.ObjectiveThis study aimed to survey physicians managing patients with bronchiectasis to understand the perceived risk of NTM to their patients, perceived disease severity and frequency of testing for NTM.MethodsThe study comprised an online survey of hospital-based physicians in the UK, Germany, Italy, France and the Netherlands. The target group were hospital-based physicians who had managed at least 10 adult patients with bronchiectasis over the preceding 12 months.ResultsIn total, 280 physicians completed the survey. Most (87%) thought their patients to be at particular risk of NTM, although it was perceived as a moderate risk versus other respiratory pathogens. Most perceived NTM-LD to impact patient morbidity (84%), and 61% indicated that NTM-LD significantly impacted mortality. 68% of all respondents did not test for NTM prior to initiating macrolide monotherapy, despite guidelines recommending testing. The perceived risk of and screening for NTM varied among countries.ConclusionsThe study demonstrates that physicians understand the risk of NTM-LD and associated morbidity in patients with bronchiectasis; however, a minority do not perceive that NTM-LD significantly affects mortality. Greater awareness of the need to test for NTM infection before initiating macrolide monotherapy for bronchiectasis is essential due to potential emergence of drug-resistant NTM.


2020 ◽  
Vol 40 (06) ◽  
pp. 719-729
Author(s):  
Tanya J. W. McDonald ◽  
Mackenzie C. Cervenka

AbstractKetogenic diet therapies are high-fat, low-carbohydrate diets designed to mimic a fasting state. Although initially developed nearly one century ago for seizure management, most clinical trials for the management of drug-resistant epilepsy in children as well as adults have been conducted over the last 3 decades. Moreover, ketogenic diets offer promising new adjunctive strategies in the critical care setting for the resolution of acute status epilepticus when traditional antiseizure drugs and anesthetic agents fail. Here, we review the history of ketogenic diet development, the clinical evidence supporting its use for the treatment of drug-resistant epilepsy in children and adults, and the early evidence supporting ketogenic diet feasibility, safety, and potential efficacy in the management of status epilepticus.


2021 ◽  
Vol 12 ◽  
Author(s):  
Antonella Fattorusso ◽  
Sara Matricardi ◽  
Elisabetta Mencaroni ◽  
Giovanni Battista Dell'Isola ◽  
Giuseppe Di Cara ◽  
...  

Epilepsy is one of the most common neurological chronic disorders, with an estimated prevalence of 0. 5 – 1%. Currently, treatment options for epilepsy are predominantly based on the administration of symptomatic therapy. Most patients are able to achieve seizure freedom by the first two appropriate drug trials. Thus, patients who cannot reach a satisfactory response after that are defined as pharmacoresistant. However, despite the availability of more than 20 antiseizure medications (ASMs), about one-third of epilepsies remain drug-resistant. The heterogeneity of seizures and epilepsies, the coexistence of comorbidities, and the broad spectrum of efficacy, safety, and tolerability related to the ASMs, make the management of these patients actually challenging. In this review, we analyze the most relevant clinical and pathogenetic issues related to drug-resistant epilepsy, and then we discuss the current evidence about the use of available ASMs and the alternative non-pharmacological approaches.


2017 ◽  
Vol 17 (6) ◽  
pp. 346-350 ◽  
Author(s):  
Tanya J. W. McDonald ◽  
Mackenzie C. Cervenka

The current review highlights the evidence supporting the use of ketogenic diets in the management of drug-resistant epilepsy and status epilepticus in adults. Ketogenic diet variants are compared and advantages and potential side effects of diet therapy are discussed.


Author(s):  
Kirsty J Martin-McGill ◽  
Rebecca Bresnahan ◽  
Robert G Levy ◽  
Paul N Cooper

2021 ◽  
Vol 12 ◽  
pp. 204062072110070
Author(s):  
Kate Khair ◽  
Elizabeth Chalmers ◽  
Thuvia Flannery ◽  
Annabel Griffiths ◽  
Felicity Rowley ◽  
...  

Background and Aims: Despite advances in haemophilia care, inhibitor development remains a significant complication. Although viable treatment options exist, there is some divergence of opinion in the appropriate standard approach to care and goals of treatment. The aim of this study was to assess consensus on United Kingdom (UK) standard of care for child and adult haemophilia patients with inhibitors. Methods: A modified Delphi study was conducted using a two-round online survey. A haemophilia expert steering committee and published literature informed the Round 1 questionnaire. Invited participants included haematologists, haemophilia nurses and physiotherapists who had treated at least one haemophilia patient with inhibitors in the past 5 years. Consensus for 6-point Likert scale questions was pre-defined as ⩾70% participants selecting 1–2 (disagreement) or 5–6 (agreement). Results: In all, 46.7% and 35.9% questions achieved consensus in Rounds 1 ( n = 41) and 2 ( n = 34), respectively. Consensus was reached on the importance of improving quality of life (QoL) and reaching clinical goals such as bleed prevention, eradication of inhibitors and pain management. There was agreement on criteria constituting adequate/inadequate responses to immune tolerance induction (ITI) and the appropriate factor VIII dose to address suboptimal ITI response. Opinions varied on treatment aims for adults and children/adolescents, when to offer prophylaxis with bypassing agents and expectations of prophylaxis. Consensus was also lacking on appropriate treatment for mild/moderate patients with inhibitors. Conclusion: UK healthcare professionals appear to be aligned on the clinical goals and role of ITI when managing haemophilia patients with inhibitors, although novel treatment developments may require reassessment of these goals. Lack of consensus on prophylaxis with bypassing agents and management of mild/moderate cases identifies a need for further research to establish more comprehensive, evidence-based treatment guidance, particularly for those patients who are unable/prefer not to receive non-factor therapies.


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