Drug-resistant epilepsy and ketogenic diet therapy - a qualitative study of families' experiences.

BACKGROUND: A diagnosis of drug-resistant epilepsy is life changing for a family. Ketogenic diet therapy (KDT) can offer hope when other treatments have failed. However, it often requires a significant change in daily routine and dietary habits. This qualitative descriptive study aimed to explore families' experiences of epilepsy and KDT. METHODS: Parents of a child aged ≤18 years with epilepsy, currently or recently treated with KDT, were recruited from the UK and internationally via UK Ketogenic Diet (KD) centres, charities, and social media. Semi-structured interviews were audio recorded, transcribed verbatim, anonymised, coded using Nvivo (V12), and inductive thematic analysis undertaken. RESULTS: Twenty-one parents participated. Four themes and 12 subthemes emerged: 1. 'Epilepsy is all consuming' explored the impact of epilepsy on the family. 2. 'KD provides a window to new opportunities' explores the motivators for KDT and positive outcomes. 3. 'The reality of KD' explores day to day life and how families adapt to KD. 4. 'Looking to the future' explores the factors that may make KD easier for families. All were glad their child trialled KD, even when less successful. The importance of a support network including family, friends, charity organisations and the KD team was evident across all themes. CONCLUSIONS: We conclude with five recommendations to help support families in their management of KDT; Improved access to KDT and transition to adult services, access to quality education and support, enhanced variety of KD foods, regular social education and finally consideration of peer mentoring.

A case study of the impact of a dietitian in the multi-disciplinary team within primary care: a service evaluation.

BACKGROUND: Expanding the primary care workforce to alleviate general practitioner (GP) workload, improve access and improve quality of care is a current UK strategy. Evidence suggests dietitians can improve patient outcomes and make cost savings. The present study aimed to evaluate a dietitian working as an expert generalist and first contact practitioner (FCP) in a general practice multi-disciplinary team (MDT) to provide appropriate care to patients and reduce GP workload. METHODS: A dietitian was employed for 6 months at 0.6 full-time equivalents in a group of general practices in Devon, UK. Data were collected on the referral source, patient satisfaction, health outcomes and changes in prescribing data for all patients seen by the dietitian. Focus groups and interviews provided data to understand the experience of introducing a dietitian into the team. RESULTS: This model of service delivery showed the dietitian acting as an expert generalist, a FCP and able to educate the MDT. A range of professionals within the MDT referred patients with a wide range of diagnoses (both paediatric and adults) and the dietitian acted as a FCP for 29% of patients. Saving were made for the optimisation of medicine management. CONCLUSIONS: The dietitian can improve patient-centred care for several patient groups; enhance learning for staff around nutrition and dietary issues; and contribute to more efficient working and cost savings around prescription of nutritional products. This was an evaluation of one service and further research is needed to understand the value dietitians can contribute and the factors supporting effective and efficient working in this context.

A core outcome set for childhood epilepsy treated with ketogenic diet therapy (CORE-KDT study): International parent and health professional consensus.

OBJECTIVE: Ketogenic diet therapy (KDT) can result in benefits (seizure-related and non-seizure-related) for children with drug-resistant epilepsy. However, clinical trials report a wide range of outcomes, making synthesis of evidence difficult, and do not adequately reflect parent views on important outcomes for their child. To address this, we established the first international parent, health professional, and researcher consensus to develop a core outcome set, guided by the Core Outcome Measures in Effectiveness Trials (COMET) Initiative (COMET registration #1116). METHODS: Ethical approval was granted (London-Surrey REC19/LO/1680). A scoping review and interviews with parents identified a comprehensive list of potentially important outcomes, followed by a two-round online Delphi survey of parents and health professionals to prioritize outcomes of importance for inclusion in a core outcome set. This informed a stakeholder consensus meeting and consultation process to finalize the core outcome set. RESULTS: In total, 97 outcomes were identified; 90 from the scoping review and seven from parent interviews. These were rationalized to 77 by the study advisory group, then rated in the first Delphi round by 49 parents and 96 health professionals, who suggested 12 new outcomes for rating in Round 2. Sixty-six percent of participants (30 parents and 66 professionals) completed Round 2, where 22 outcomes met criteria for inclusion. In the consensus meeting (nine parents and 13 professionals), 27 undecided outcomes were discussed and scored; one further outcome reached consensus for inclusion. After consultation and ratification, 14 outcomes across five domains were included in the core outcome set. SIGNIFICANCE: A core outcome set for childhood epilepsy treated with KDT has been developed, incorporating the views of international parents and professionals. Implementation in research and clinical settings will standardize outcome selection and reporting, facilitate data synthesis, and ultimately enhance the relevance of outcomes to parents, researchers, and health professionals.

Impact of a dietitian in general practice: paediatric food allergy.

BACKGROUND: Food allergy in infants and young children places a significant burden on primary care. This study evaluated a dietetic-led paediatric food allergy service, which attempts to provide more rapid access to the dietitian and reduce the need for general practitioner (GP) and secondary care appointments. METHODS: Two community dietetic services for children referred with food allergy were compared. The first was dietetic-led care where dietitians train community children's nurses to recognise potential cases of food allergy, undertake basic diagnostic assessment and subsequently refer to the dietitian. The other was a more traditional dietetic community service where patients were referred predominantly by the GP or secondary care. RESULTS: In dietetic-led care 86 patients were seen, compared to 96 in dietetic community care. Dietetic-led care received fewer referrals from the GP, 36% versus 67% (p < 0.001); GP appointments for allergy-related conditions prior to dietetic referral were lower, 3 versus 6 visits (p = 0.001); and input from secondary care was also lower, 8 versus 25 patients (p = 0.002) compared with dietetic community care. Children referred to dietetic-led care were younger, 78% <6 months versus 40% (p < 0.001) in dietetic community care. CONCLUSIONS: Dietetic-led care describes a model that has the potential to reduce GP and secondary care appointments, identify patients more quickly and reduce the time to receive dietetic input, thereby resolving symptoms more quickly and reducing prescribed medications. This model demonstrates the importance of integrated care and multidisciplinary working, offering a solution to reducing GP workload while maintaining or improving patient care.

The CORE-KDT study: a mixed methods protocol to establish core outcomes for refractory childhood epilepsy treated with ketogenic diet therapy.

BACKGROUND: A core outcome set defines the minimum outcomes that should be included in clinical trials, audit or practice. The aim being to increase the quality and relevance of research by ensuring consistency in the measurement and reporting of outcomes. Core outcome sets have been developed for a variety of disease states and treatments. However, there is no established set of core outcomes for refractory childhood epilepsy treated with ketogenic diet therapy. This should be developed using a patient-centred approach to ensure the outcomes measured are relevant to patients and clinical practice. METHODS: This is a mixed methods study of four phases to develop a core outcome set for refractory childhood epilepsy treated with ketogenic diet therapy. In phase 1, a systematic scoping review of the literature will establish which outcomes are measured in trials of refractory epilepsy treated with ketogenic diet therapy. In phase 2, qualitative interviews with parents and carers will aim to identify the outcomes of importance to these stakeholders. Phase 3 will see a comprehensive list of outcomes collated from the first two phases, grouped into domains according to an outcome taxonomy. Phase 4 will invite parents, health care professionals and researchers to participate in a two-round Delphi study to rate the importance of the presented outcomes. Following which, the core outcome set will be ratified at a face to face consensus meeting. DISCUSSION: This study will guide outcome measurement in future studies of childhood epilepsy treated with ketogenic diet therapy and clinical practice through audit and service evaluation.

Core outcome set development for childhood epilepsy treated with ketogenic diet therapy: Results of a scoping review and parent interviews.

PURPOSE: Clinical trials on childhood epilepsy treated with ketogenic diet (KD) use a wide range of outcomes, however, patients and decision-makers often do not perceive the outcomes used as the most important. We sought parental opinion on outcomes of importance and compared these to outcomes reported in published research. METHODS: Ethical approval (London-Surrey-REC19/LO/1680). A scoping review identified outcomes reported in previous studies of childhood epilepsy and KD. Parents were recruited from nine KD centres (UK), charities and social media (international), then interviewed (Jan-April 2020) to explore priority outcomes. Content analysis identified all outcomes in transcripts. Parent identified outcomes were compared with those in the scoping review. Outcomes were collated and grouped into domains according to the COMET Taxonomy. RESULTS: Of 2663 articles;147 met inclusion criteria. 921 verbatim outcomes were sorted into 90 discrete outcomes, reduced to 70 in consultation with the study advisory group, then classified into 21 domains. Parents (n = 21) identified 39 outcomes as important from the scoping review and seven new outcomes. They prioritised both physiological and functional outcomes in contrast to past studies, which prioritised physiological outcomes. CONCLUSION: Little consistency exists in the outcomes used in childhood epilepsy and KD research. Those traditionally used do not adequately reflect parents' important outcomes for their child. Clinical trials should consider the broader priorities of parents when choosing outcomes, in particular, functional outcomes. Identified outcomes will inform an international two-round Delphi-study with parent, professional and researcher participants to develop a core outcome set for this clinical area (COMET registration #1116).

Impact of a dietitian in general practice: Care of the frail and malnourished.

BACKGROUND: There is an increased demand in primary healthcare but general practitioner (GP) numbers are declining, creating significant challenges. Dietitians are ideal professionals to lead the treatment of patients with conditions that are amenable to dietary manipulation, including the management of malnutrition and frailty. The present study evaluated the benefits of a model of care in which a dietitian, working as a first contact practitioner within a general practice, provided care to patients at risk of malnutrition and frailty, aiming to reduce GP workload, improve patient care and make cost savings. METHODS: A service evaluation with a dietitian employed 6 h per week for 6 months. The practice database was screened for patients aged ≥65 years and electronic Frailty index 0.26-0.36 or body mass index <19 kg m-2 . These patients were triaged by the dietitian and those at risk of malnutrition offered consultations. Patients prescribed oral nutritional supplements (ONS) and not under dietetic management were also seen. RESULTS: Approximately 1200 patients met the screening criteria; 189 (16%) patients were triaged by the dietitian. Most (75%) were at risk of malnutrition and 63 of these were seen. Improvements in strength, frailty and nutrition status were observed, and changes to ONS prescriptions in 27 patients equated to annual cost savings of £15,379. Patient satisfaction was high. CONCLUSIONS: Dietitians, acting as first contact practitioners, can deliver significant improvements in care for older people at risk of malnutrition and frailty as part of the practice multi-disciplinary team. Cost savings for ONS were made and other potential cost saving were evident.

Improved prediction equations for estimating height in adults from ethnically diverse backgrounds.

BACKGROUND & AIMS: When body height cannot be measured, it can be predicted from ulna length (UL). However, commonly used published prediction equations may not provide useful estimates in adults from all ethnicities. This study aimed to evaluate the relationship between UL and height in adults from diverse ethnic groups and to consider whether this can be used to provide useful prediction equations for height in practice. METHODS: Standing height and UL were measured in 542 adults at seven UK locations. Ethnicity was self-defined using UK Census 2011 categories. Data were modelled to give two groups of height prediction equations based on UL, sex and ethnicity and these were tested against an independent dataset (n = 180). RESULTS: UL and height were significantly associated overall and in all groups except one with few participants (P = 0.059). The new equations yielded predicted height (Hp) that was closer to measured height in the Asian and Black subgroups of the independent population than the Malnutrition Universal Screening Tool (MUST) equations. For Asian men, (Hp (cm) = 3.26 UL (cm) + 83.58), mean difference from measured (95% confidence intervals) was -0.6 (-2.4, +1.2); Asian women, (Hp = 3.26 UL + 77.62), mean difference +0.5 (-1.4, 2.4) cm. For Black men, Hp = 3.14 UL + 85.80, -0.4 (-2.4, 1.7); Black women, Hp = 3.14 UL + 79.55, -0.8 (-2.8, 1.2). These differences were not statistically significant while predictions from MUST equations were significantly different from measured height. CONCLUSIONS: The new prediction equations provide an alternative for estimating height in adults from Asian and Black groups and give mean predicted values that are closer to measured height than MUST equations.

Dietitian-led clinics in primary care: a scoping review protocol.

OBJECTIVE: This scoping review aims to examine and map the existing evidence exploring and/or evaluating the implementation, cost and/or effectiveness of dietitian-led clinics in primary care. INTRODUCTION: Dietitians may be able to offer new models of care within the primary care setting for relevant diagnosed patients, providing cheaper, more efficient and effective service in comparison to the traditional approach of general practitioner support and referral for specialist treatment. There is some evidence for the efficacy of dietetic care in primary care, but there is a lack of information concerning the broader contribution dietitians may make, including cost effectiveness and the range of conditions that dietitians may successfully manage. INCLUSION CRITERIA: Eligible studies will explore dietitian- or nutritionist-led clinics treating patients with any condition, and will be based in primary care or general practice settings in developed countries. Studies may include experimental, quasi-experimental, observational and qualitative studies. METHODS: The searches will be limited to the past 10 years to ensure retrieved information will be relevant to today's healthcare setting. There will be no limit for language. The following databases will be searched: MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), CINAHL (EBSCO), AMED (EBSCO), British Nursing Index (ProQuest), and Cochrane Database of Systematic Reviews (Wiley). Retrieved papers will be screened for inclusion by at least two reviewers. Where a decision is not possible, full text will be retrieved and reviewed. Data will be extracted from the included papers and a narrative summary will accompany the charted results and will describe how the results relate to the review's objective.

Observations on the relationship between the dietetic objective structured clinical examination and placement outcome.

AIM: Objective structured clinical examinations (OSCEs) are used extensively in medical education to prepare students for the clinical setting. Their use in dietetic education is still relatively new, and relationships to placement outcomes are unknown. The aim of this study was to explore 11 years of OSCE and placement data to answer the following questions: Does the OSCE predict dietetic placement outcome? and, What are the student perceptions of the benefits of OSCE in preparation for practice? METHODS: Data were collected retrospectively from 328 students between 2006 and 2017 who had completed their final year OSCE and placement. Aggregate OSCE marks and mean marks obtained in active and passive OSCE stations were compared with placement outcome. Evaluation questionnaires completed by students at the end of the OSCE were collated. RESULTS: Aggregate marks achieved in OSCE stations were significantly different for students who passed (mean = 63.24, SD = 7.94), struggled (mean = 58.25, SD = 8.82) or failed (mean = 57.31, SD = 8.28) placement, P < 0.001. Majority of students perceived the OSCE as a meaningful and fair assessment (92%) that helped to prepare them for practice (82%). CONCLUSIONS: The OSCE provides a meaningful assessment of dietetic student skills in preparation for practice. Aggregate OSCE marks provide a consistent indicator of students who are likely to struggle in practice.

Outcome measurement and reporting in childhood epilepsy treated with ketogenic diet therapy: a scoping review protocol.

REVIEW OBJECTIVE/QUESTION: The objective of this scoping review is to investigate the outcomes measured and reported in trials of children with refractory epilepsy treated with ketogenic diet therapy. The scoping review will aim to list the outcomes and map the associated components including intervention (type of ketogenic diet therapy), definition (if used) of the outcome, the tool or indicators used to measure the outcome, validity of tool used, the time from intervention commencement to measurement of the outcome and the reporting of the outcome.Specifically, the review question is: What outcomes are measured and reported in studies of childhood epilepsy treated with ketogenic diet therapy?

Efficacy of non-pharmacological interventions to treat malnutrition in older persons: A systematic review and meta-analysis. The SENATOR project ONTOP series and MaNuEL knowledge hub project.

INTRODUCTION: We aimed to perform a review of SRs of non-pharmacological interventions in older patients with well-defined malnutrition using relevant outcomes agreed by a broad panel of experts. METHODS: PubMed, Cochrane, EMBASE, and CINHAL databases were searched for SRs. Primary studies from those SRs were included. Quality assessment was undertaken using Cochrane and GRADE criteria. RESULTS: Eighteen primary studies from seventeen SRs were included. Eleven RCTs compared oral nutritional supplementation (ONS) with usual care. No beneficial effects of ONS treatment, after performing two meta-analysis in body weight changes (six studies), mean difference: 0.59 (95%CI -0.08, 1.96) kg, and in body mass index changes (two studies), mean difference: 0.31 (95%CI -0.17, 0.79) kg/m2 were found. Neither in MNA scores, muscle strength, activities of daily living, timed Up&Go, quality of life and mortality. Results of other intervention studies (dietary counselling and ONS, ONS combined with exercise, nutrition delivery systems) were inconsistent. The overall quality of the evidence was very low due to risk of bias and small sample size. CONCLUSIONS: This review has highlighted the lack of high quality evidence to indicate which interventions are effective in treating malnutrition in older people. High quality research studies are urgently needed in this area.

Protein Provision in Critically Ill Adults Requiring Enteral Nutrition: Are Guidelines Being Met?

BACKGROUND: In a previous audit, 81% of enteral protein prescriptions failed to meet protein guidelines. To address this, a very high-protein enteral formula and protein supplements were introduced, and protein prescriptions were adjusted to account for nonnutrition energy sources displacing enteral formula. This follow-up audit compared protein provision in critically ill adults requiring exclusive enteral nutrition (EN), first, with local and international guidelines, and second, after changes to practice, with the previous audit in the same intensive care unit (ICU). METHODS: Data were collected from 106 adults consecutively admitted to the ICU of a U.K. tertiary hospital and requiring exclusive EN ≥3 days. Protein targets based on local guidelines (1.25, 1.5, or 2.0 g/kg/d), nutrition prescription, and delivery were recorded for 24 hours between days 1-3, 5-7, 8-10, and 18-20 post-ICU admission. RESULTS: The proportion of day 1-3 protein prescriptions meeting protein targets increased from 19% in 2015 to 69% in 2017 (P < .0005, φ = 0.50). The median percentage of protein target delivered was lower than prescribed (79% vs 103%; (P < .0005; r = 0.53) and EN delivery only met the target of 22% of patients. The proportion of protein prescriptions meeting protein targets was similar for days 1-3 (69%), 5-7 (71%), and 8-10 (68%), but increased slightly by days 18-20 (74%). The proportion of patients for which EN delivery met protein targets increased with the number of days post-ICU admission (22%, 26%, 37%, and 53% for days 1-3, 5-7, 8-10, and 18-20, respectively). CONCLUSION: The proportion of protein prescriptions meeting guideline targets was higher after changes to practice.

Validation of Novel Metrics from the Accommodative Dynamic Profile.

Objective and subjective methods of assessing time taken for accommodative change (ToAC) include accommodative dynamics (AD) and accommodative facility (AF). This study investigates the validity of novel metrics derived from the AD-profile and explores their relationship with AF. AD were assessed using a modified open-field autorefractor in 43 healthy adults. Non-linear regression curves were fitted to the data to derive: latency-of-accommodation (nLoA) and -disaccomodation (nLoD), Time-for-accommodation (ToA) and -disaccommodation (ToD), and objective-ToAC (oToAC). Latencies were also calculated through visual inspection of the AD data as in previous studies (pLoA and pLoD). AF was used to assess subjective-ToAC. Statistical analysis explored the relationships between the AD-metrics and AF. Subjects were assessed on three visits to examine intra- and inter-observer repeatability. nLoA and nLoD were greater than pLoA (p = 0.001) and pLoD (p = 0.004) respectively. nLoA and nLoD also demonstrated greater intra- and inter-observer repeatability than pLoA and pLoD. AF demonstrated a moderate, inverse correlation with ToA (p = 0.02), ToD (p = 0.007), and oToAC (p = 0.007). ToD was the single best accommodative predictor of AF (p = 0.011). The novel method for deriving latency was more repeatable, but not interchangeable with the techniques used in previous studies. ToD was the most repeatable metric with the greatest association with AF.

Red meat, dietary heme iron, and risk of type 2 diabetes: the involvement of advanced lipoxidation endproducts.

There is growing evidence of disordered iron homeostasis in the diabetic condition, with links proposed between dietary iron intakes and both the risk of disease and the risk of complications of advanced disease. In the United States, Britain, and Canada, the largest dietary contributors of iron are cereals and cereal products and meat and meat products. This review discusses the findings of cohort studies and meta-analyses of heme iron and red meat intakes and the risk of type 2 diabetes. These suggest that processed red meat is associated with increased risk, with high intakes of red meat possibly also associated with a small increased risk. Historically, humans have relied on large quantities of heme iron and red meat in their diets, and therefore it is paradoxical that iron from meat sources should be associated with the risk of type 2 diabetes. A reason for this association may be drawn from studies of dietary advanced glycation and lipoxidation endproducts present in processed food and the mechanisms by which insulin output by pancreatic islet cells might be influenced by the protein modifications present in processed red meat.