South Asian individuals’ experiences on the NHS low-calorie diet programme: a qualitative study in community settings in England

Background: Existing literature examines barriers to the provision of ethnically diverse dietary advice, however, is not specific to total diet replacement (TDR). There is a lack of literature from the UK, limiting the potential applicability of existing findings and themes to the UK context. This study addresses this gap in research by interviewing participants of South Asian ethnicity who have undertaken the National Health Service (NHS) low-calorie diet programme (LCD) for people with type 2 diabetes living with overweight or obesity. This study explores factors that may affect the uptake and acceptability of its TDR, food reintroduction and weight maintenance stages. This aims to provide rich data that can inform effective tailoring of future programmes with South Asian participants. Objective: To explore the perspectives of individuals of South Asian ethnicity on an NHS programme using TDR approaches for the management of type 2 diabetes (T2D). Design: Qualitative study. Setting: Individuals in the community undertaking the NHS LCD programme. Participants: Twelve one-to-one interviews were conducted with individuals from a South Asian ethnicity participating in the NHS LCD. Main outcome measures: Qualitative semistructured interviews conducted through different stages of the programme. Reflexive thematic analysis was used to analyse the transcripts. Results: Key themes highlighted positive and negative experiences of the programme: (1) more work is needed in the programme for person centeredness; (2) it is not the same taste; (3) needing motivation to make changes and feel better; (4) a mixed relationship with the coach; (5) social experiences; (6) culture-related experiences. Conclusion: This study provides important experience-based evidence of the need for culturally tailored T2D programmes. Action to address these findings and improve the tailoring of the NHS LCD may improve experience, retention and outcomes on the programme for people of South Asian ethnicity and thereby reduce inequalities

Management practices for west syndrome in south Asia: A survey study and meta-analysis

Objectives: Considering the dearth of literature on West syndrome (WS) from South Asian countries, this study aimed to evaluate the management practices in South Asia by an online survey and meta-analysis.Methods: An online questionnaire was sent to 223 pediatric neurologists/pediatricians in India, Pakistan, Myanmar, Sri Lanka, Bhutan, Nepal, and Bangladesh. Their responses were evaluated and supplemented by a meta-analysis.Results: Of 125 responses received (response rate: 56%), around 60% of responders observed male preponderance and an approximate lead-time-to-treatment (LTTT) of 4-12 weeks. The commonest etiology observed was a static structural insult (88.6% of responders). Most commonly used first-line drug (country-wise) was as follows: India-adrenocorticotropin hormone (ACTH, 50%); Pakistan-oral steroids (45.5%); Myanmar, Sri Lanka, and Nepal-oral steroids (94.4%); Bangladesh-ACTH (2/2); Bhutan-vigabatrin (3/5). ACTH and vigabatrin are not available in Myanmar and Nepal. The most commonly used regime for ACTH was maximal-dose-at-initiation-regime in India, Sri Lanka, and Bangladesh and gradually escalating-regime in Pakistan. Maximum dose of prednisolone was variable-most common response from India: 3-4 mg/kg/d; Pakistan, Bhutan, and Bangladesh: 2 mg/kg/d; Sri Lanka, Nepal, and Myanmar: 5-8 mg/kg/d or 60 mg/d. The total duration of hormonal therapy (including tapering) ranged from 4 to 12 weeks (67/91). Most responders considered cessation of spasms for four weeks as complete response (54/111) and advised electroencephalography (EEG; 104/123) to check for hypsarrhythmia resolution. Difficult access to pediatric EEG in Bhutan and Nepal is concerning. More than 95% of responders felt a need for more awareness. The meta-analysis supported the preponderance of male gender (68%; confidence interval [CI]: 64%-73%), structural etiology(80%; CI 73%-86%), longer LTTT (2.4 months; CI 2.1-2.6 months), and low response rate to hormonal therapy(18% and 28% for ACTH and oral steroids respectively) in WS in South Asia.Significance: This study highlights the practices and challenges in the management of WS in South Asia. These include a preponderance of male gender and structural etiology, a longer LTTT, difficult access to pediatric EEG, nonavailability of ACTH and vigabatrin in some countries, and low effectiveness of hormonal therapy in this region

Does the design of the NHS Low‐Calorie Diet Programme have fidelity to the programme specification? A documentary review of service parameters and behaviour change content in a type 2 diabetes intervention

Background: NHS England commissioned four independent service providers to pilot low‐calorie diet programmes to drive weight loss, improve glycaemia and potentially achieve remission of Type 2 Diabetes across 10 localities. Intervention fidelity might contribute to programme success. Previous research has illustrated a drift in fidelity in the design and delivery of other national diabetes programmes. Aims: (1) To describe and compare the programme designs across the four service providers; (2) To assess the fidelity of programme designs to the NHS England service specification. Methods: The NHS England service specification documents and each provider's programme design documents were double‐coded for key intervention content using the Template for Intervention Description and Replication Framework and the Behaviour Change Technique (BCT) Taxonomy. Results: The four providers demonstrated fidelity to most but not all of the service parameters stipulated in the NHS England service specification. Providers included between 74% and 87% of the 23 BCTs identified in the NHS specification. Twelve of these BCTs were included by all four providers; two BCTs were consistently absent. An additional seven to 24 BCTs were included across providers. Conclusions: A loss of fidelity for some service parameters and BCTs was identified across the provider's designs; this may have important consequences for programme delivery and thus programme outcomes. Furthermore, there was a large degree of variation between providers in the presence and dosage of additional BCTs. How these findings relate to the fidelity of programme delivery and variation in programme outcomes and experiences across providers will be examined

A Qualitative evaluation in community settings in England exploring the experiences of coaches delivering the NHS Low Calorie Diet programme pilot to ethnically diverse participants

Background: The management of type 2 diabetes (T2D) within diverse ethnic populations requires a culturally tailored approach. However, little is known about the experiences of coaches delivering interventions for T2D, such as the National Health Service (NHS) Low Calorie Diet (LCD) programme, to people from diverse ethnic backgrounds. Objective: To explore the experiences of coaches delivering an NHS programme using total diet replacement approaches to individuals from diverse ethnic backgrounds, to inform the effective tailoring and equitable delivery of future interventions. Design: Qualitative study. Setting: Individuals delivering the NHS LCD programme. Participants: One-to-one semistructured interviews were conducted with seven health coaches delivering the NHS LCD programme. Inclusion criteria included participants delivering the NHS LCD programme either from a minoritised ethnic background or delivering the programme to those from ethnic minority and white British backgrounds. Main outcome measures: Qualitative semistructured interviews conducted through different stages of the programme. Reflexive thematic analysis was used to analyse the transcripts. Results: Key themes highlighted the following experiences of delivering the LCD programme: (1) training and support needs; (2) needing to understand culture and ethnicity; (3) the impact of language; (4) the use of resources in providing dietary advice and (5) experiences of cultural tailoring. The themes highlight the need to prioritise person-centred care, to integrate culturally tailored approaches and for provision of education and training to those delivering health programmes. Conclusion: These findings describe the experiences of health coaches in tailoring delivery and emphasise the role of cultural competence in ensuring equitable and effective healthcare interventions for diverse populations. This learning can inform future programmes and policies aimed at promoting inclusive healthcare practices

Views, perceptions, and experiences of type 2 diabetes or weight management programmes among minoritised ethnic groups living in high-income countries: A systematic review of qualitative evidence

Summary Background Prevalence of both obesity and type 2 diabetes can be higher in patients from certain ethnic groups, yet uptake and adherence to current support within these groups is lower, leading to widening health inequalities in high‐income countries. Objectives The main objective of this study is to understand the views, perceptions, and experiences of and barriers and facilitators in relation to the uptake and adherence to weight management and type 2 diabetes programs in minoritized ethnic groups in high‐income countries. Methods CINAHL, MEDLINE, PsycINFO, Scopus, Academic Search Complete, and PubMed were searched for English language studies undertaken in community‐dwelling adults residing in high‐income countries, who are from a minoritized ethnic group within the country of study. Results Seventeen studies were synthesized using the JBI System for the Unified Management of the Assessment and Review of Information. From these studies, 115 findings were retrieved, and seven key themes were identified: (1) family health status and program education, (2) social support, (3) challenges, (4) cultural beliefs, (5) increased awareness and dietary changes, (6) impact of psychological evaluations, and (7) considerations for future. Conclusions Nutritional considerations for type 2 diabetes mellitus and weight management programs in high‐income countries should include social, habitual, economic, and conceptual components, which should include consideration of local ethnic and cultural norms and building community relationships while creating culturally tailored programs

Pan-sarcoma database (PSDB): A model-view-controller framework application utilizing REDCap, shiny, and R to create a continuous pipeline of sarcoma data that can inform the care of current patients

589 Background: Sarcomas are a rare group of mesenchymal malignancies arising soft tissue and bone, often requiring multidisciplinary care. The Pan-Sarcoma Database (PSDB) is an innovative open-source research application developed to efficiently collect and manage data on sarcoma patients to create a reliable research pipeline by funneling data from multiple sources. This process can be customized to fit other institutions and can be used to explore disparities and improve quality for cancer patients. We will share our data structure, process, and code as an adaptable framework for other multidisciplinary research groups with overlapping patients. Methods: The Model-View-Controller (MVC) framework is a software design pattern used by many modern applications. In this framework, "model" is the database, including the structure and metadata; "view" is the user interface software; "controller" is the coding language used to handle user input, update the model, and interact with the viewer. PSDB uses REDCap, shiny, and R, respectively. We integrated relational database concepts in our design, such as normalization, and utilized standards from Clinical Data Interchange Standards Consortium (CDISC). The database is comprised of 290 data fields to capture demographics, survival data, initial HPI, pathology, stage, grade, detailed location, detailed progression history, and associated treatment data. Results: We captured data from 28,380 candidate sarcoma patients from 2010 to present, including 3,291 confirmed cases, with 751 cases reviewed to date, merging data from multiple databases, pathology, and prior projects. Currently, 30.6% of our cases are metastatic at diagnosis; 57.7% are High grade, 28.9% are Intermediate grade, and 8.9% low grade; the median age at diagnosis is 55; 93.5% of reviewed cases received systemic therapy and 73.1% received radiation. By capturing key data and organizing an open-source code base in R mapped to our “model”, we produced updating tables, statistics, time-to-endpoint analyses, and other modifiable outputs to identify outcome disparities. Conclusions: The PSDB successfully addresses the unique data challenges faced in sarcoma research group. The use of the MVC framework with REDCap, shiny, and R, enabled the creation of an application that is secure, user-friendly, and adaptable, supporting collaborative research efforts. This project also emphasizes the importance of employing appropriate tools for data management and encourages similar initiatives to enhance collaboration and benefit both research teams and the patients they study. Furthermore, because it is open-source it can be used and modified by other research teams to improve the quality of care for cancer patients