Dementia resources for eating, activity, and meaningful inclusion (DREAM) toolkit co-development: process, output, and lessons learned.

Promoting wellbeing of persons with dementia and their families is a priority of research and practice. Engaging diverse partners, including persons with dementia and their families, to co-develop interventions promotes relevant and impactful solutions. We describe the process, output, and lessons learned from the dementia resources for eating, activity, and meaningful inclusion (DREAM) project, which co-developed tools/resources with persons with dementia, care partners, community service providers, health care professionals, and researchers with the aim of increasing supports for physical activity, healthy eating, and wellbeing of persons with dementia. Our process included: (1) Engaging and maintaining the DREAM Steering Team; (2) Setting and navigating ways of engagement; (3) Selecting the priority audience and content; (4) Drafting the toolkit; (5) Iterative co-development of tools and resources; (6) Usability testing; and (7) Implementation and evaluation. In virtual meetings, the DREAM Steering Team confirmed the toolkit audiences (primary: community service providers; secondary: persons with dementia and care partners) and identified and evolved content areas. An environmental scan identified few existing, high-quality resources aligned with content areas. The Steering Team, additional multi-perspective partners, and external contractors iteratively co-developed new tools/resources to meet gaps over a 4-month virtual process that included virtual meetings, email exchange of documents and feedback, and one-on-one calls by telephone or email. The final DREAM toolkit includes a website with seven learning modules (on the diversity of dementia, rights and inclusion of persons living with dementia, physical activity, healthy eating, dementia-inclusive practices), a learning manual, six videos, nine handouts, and four wallet cards ( www.dementiawellness.ca ). Our co-development participants rated the process highly in relation to the principles and enablers of authentic partnership even though all engagement was virtual. Through use of the co-developed DREAM toolkit, we anticipate community service providers will gain the knowledge and confidence needed to provide dementia-inclusive wellness programs and services that benefit persons with dementia and their families.

Consensus-based nutrition care pathways for hospital-to-community transitions and older adults in primary and community care.

BACKGROUND: Practical guidance for providers on preventing, detecting, and treating malnutrition in primary care (PC) and the community is limited. The purpose of this study was to develop nutrition care pathways for adult patients (aged ≥18 years) transitioning from hospital to community and community-dwelling older adults (aged ≥65 years) who are at risk for malnutrition. METHODS: A review of best-practice nutrition evidence and guidelines published between 2009 and 2019 was performed using PubMed and CINAHL. Findings were summarized into two draft care pathways by the Primary Care Working Group of the Canadian Malnutrition Task Force. Diverse stakeholders (n = 21) reviewed and suggested revisions at a 1-day meeting. Revisions were made and an online survey was conducted to determine the relevance and importance of discrete care practices, and to establish consensus for which practices should be retained in the pathways. Providers (e.g., dietitians, physicians, nurses; n = 291) across healthcare settings completed the survey. Consensus on relevance and importance of practices was set at ≥80%. RESULTS: One hundred twenty-eight resources were identified and used to develop the draft pathways. Survey participants assigned ratings of ≥80% for relevance and importance for all nutrition care practices, except community service providers monitoring patient weight and appetite. CONCLUSION: These evidence- and consensus-based nutrition pathways offer guidance to healthcare and service providers on how to deliver nutrition care during hospital-to-community transitions for malnourished adult patients and community-dwelling older adults at risk for malnutrition. These pathways are flexible for diverse PC and community models.

The effect of blue dishware versus white dishware on food intake and eating challenges among residents living with dementia: a crossover trial.

OBJECTIVE: Residents living with dementia (RLWD) often experience changes in their visual perception, which could reduce food intake. Inadequate food intake is known to cause malnutrition, which increases the risk of hospitalization, morbidity, and mortality. This study evaluated the effectiveness of using blue dishware compared to white dishware to improve food intake and mitigate eating challenges among 18 RLWD (mean age 84.6 ± 7.9 years, 72.2% female). RESULTS: A within-within person crossover design determined differences in food intake and eating challenges between blue and white dishware conditions. Five participants responded to the blue dishware and increased their average food intake by ≥ 10%. Responders were not different from non-responders in terms of demographic or health characteristics. The proportion of eating challenges experienced was not significantly different between the blue and white dishware conditions. Percent food intake was significantly greater at lunch (83.5 ± 19.0%) compared to dinner (75.8 ± 22.1%; p < 0.0001), regardless of dishware condition. However, there were no significant differences for food intake between the dishware conditions, even after matching food choices. Promoting food intake and reducing eating challenges in RLWD likely needs multi-component interventions targeting meal quality, meal access, and mealtime experience. Trial registration ClincialTrials.gov Identifier: NCT04298788. Retrospectively registered: 6 March 2020, https://clinicaltrials.gov/ct2/show/NCT04298788?term=NCT04298788&draw=2&rank=1 .

Gastrostomy versus nasogastric tube feeding for chemoradiation patients with head and neck cancer: the TUBE pilot RCT.

BACKGROUND: Approximately 9000 new cases of head and neck squamous cell cancers (HNSCCs) are treated by the NHS each year. Chemoradiation therapy (CRT) is a commonly used treatment for advanced HNSCC. Approximately 90% of patients undergoing CRT require nutritional support via gastrostomy or nasogastric tube feeding. Long-term dysphagia following CRT is a primary concern for patients. The effect of enteral feeding routes on swallowing function is not well understood, and the two feeding methods have, to date (at the time of writing), not been compared. The aim of this pilot randomised controlled trial (RCT) was to compare these two options. METHODS: This was a mixed-methods multicentre study to establish the feasibility of a RCT comparing oral feeding plus pre-treatment gastrostomy with oral feeding plus as-required nasogastric tube feeding in patients with HNSCC. Patients were recruited from four tertiary centres treating cancer and randomised to the two arms of the study (using a 1 : 1 ratio). The eligibility criteria were patients with advanced-staged HNSCC who were suitable for primary CRT with curative intent and who presented with no swallowing problems. MAIN OUTCOME MEASURES: The primary outcome was the willingness to be randomised. A qualitative process evaluation was conducted alongside an economic modelling exercise. The criteria for progression to a Phase III trial were based on a hypothesised recruitment rate of at least 50%, collection of outcome measures in at least 80% of those recruited and an economic value-of-information analysis for cost-effectiveness. RESULTS: Of the 75 patients approached about the trial, only 17 consented to be randomised [0.23, 95% confidence interval (CI) 0.13 to 0.32]. Among those who were randomised, the compliance rate was high (0.94, 95% CI 0.83 to 1.05). Retention rates were high at completion of treatment (0.94, 95% CI 0.83 to 1.05), at the 3-month follow-up (0.88, 95% CI 0.73 to 1.04) and at the 6-month follow-up (0.88, 95% CI 0.73 to 1.04). No serious adverse events were recorded in relation to the trial. The qualitative substudy identified several factors that had an impact on recruitment, many of which are amenable to change. These included organisational factors, changing cancer treatments and patient and clinician preferences. A key reason for the differential recruitment between sites was the degree to which the multidisciplinary team gave a consistent demonstration of equipoise at all patient interactions at which supplementary feeding was discussed. An exploratory economic model generated from published evidence and expert opinion suggests that, over the 6-month model time horizon, pre-treatment gastrostomy tube feeding is not a cost-effective option, although this should be interpreted with caution and we recommend that this should not form the basis for policy. The economic value-of-information analysis indicates that additional research to eliminate uncertainty around model parameters is highly likely to be cost-effective. STUDY LIMITATIONS: The recruitment issues identified for this cohort may not be applicable to other populations undergoing CRT. There remains substantial uncertainty in the economic evaluation. CONCLUSIONS: The trial did not meet one of the three criteria for progression, as the recruitment rate was lower than hypothesised. Once patients were recruited to the trial, compliance and retention in the trial were both high. The implementation of organisational and operational measures can increase the numbers recruited. The economic analysis suggests that further research in this area is likely to be cost-effective. FUTURE WORK: The implementation of organisational and operational measures can increase recruitment. The appropriate research question and design of a future study needs to be identified. More work is needed to understand the experiences of nasogastric tube feeding in patients undergoing CRT. TRIAL REGISTRATION: Current Controlled Trials ISRCTN48569216. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 16. See the NIHR Journals Library website for further project information.

A feasibility study incorporating a pilot randomised controlled trial of oral feeding plus pre-treatment gastrostomy tube versus oral feeding plus as-needed nasogastric tube feeding in patients undergoing chemoradiation for head and neck cancer (TUBE trial): study protocol.

BACKGROUND: There are 7000 new cases of head and neck squamous cell cancers (HNSCC) treated by the NHS each year. Stage III and IV HNSCC can be treated non-surgically by radio therapy (RT) or chemoradiation therapy (CRT). CRT can affect eating and drinking through a range of side effects with 90 % of patients undergoing this treatment requiring nutritional support via gastrostomy (G) or nasogastric (NG) tube feeding. Long-term dysphagia following CRT is a primary concern for patients. The effect of enteral feeding routes on swallowing function is not well understood, and the two feeding methods have, to date, not been compared to assess which leads to a better patient outcome. The purpose of this study is to explore the feasibility of conducting a randomised controlled trial (RCT) comparing these two options with particular emphasis on patient willingness to be randomised and clinician willingness to approach eligible patients. METHODS/DESIGN: This is a mixed methods multicentre study to establish the feasibility of a randomised controlled trial comparing oral feeding plus pre-treatment gastrostomy versus oral feeding plus as required nasogastric tube feeding in patients with HNSCC. A total of 60 participants will be randomised to the two arms of the study (1:1 ratio). The primary outcome of feasibility is a composite of recruitment (willingness to randomise and be randomised) and retention. A qualitative process evaluation investigating patient, family and friends and staff experiences of trial participation will also be conducted alongside an economic modelling exercise to synthesise available evidence and provide estimates of cost-effectiveness and value of information. Participants will be assessed at baseline (pre-randomisation), during CRT weekly, 3 months and 6 months. DISCUSSION: Clinicians are in equipoise over the enteral feeding options for patients being treated with CRT. Swallowing outcomes have been identified as a top priority for patients following treatment and this trial would inform a future larger scale RCT in this area to inform best practice. TRIAL REGISTRATION: ISRCTN48569216.

An audit of percutaneous endoscopic gastrostomy insertion in patients undergoing treatment for head and neck cancer: reducing the incidence of peri-operative airway events by the introduction of a tumour assessment protocol.

INTRODUCTION: The presence of a malignancy of the upper aerodigestive tract introduces the potential for iatrogenic complications additional to those usually associated with percutaneous endoscopic gastrostomy. Specifically, seeding of tumour from the upper aerodigestive tract creating abdominal wall metastases, and airway obstruction due to tumour directly occluding the airway when a patient is sedated for percutaneous endoscopic gastrostomy. PATIENTS AND METHODS: We report an audit of our experience of gastrostomy placement for patients under going treatment for head and neck cancer in our institution from September 2003 to October 2006. RESULTS: Of 33 patients who had percutaneous endoscopic gastrostomy insertion under sedation in the first cycle of the audit, two (6%) experienced major airway complications resulting in one fatality. A tumour assessment protocol was introduced. In the second cycle, 96 patients had percutaneous endoscopic gastrostomies, of whom 16 (13%) underwent gastrostomy insertion under general anaesthetic and five (4.5%) under radiological guidance. No patients had airway complications or abdominal wall metastases. CONCLUSIONS: A formal tumour assessment protocol eliminated airway obstruction as a complication of percutaneous endoscopic gastrostomy insertion and may reduce the potential for abdominal wall metastases at the gastrostomy site when using the pull technique.

Integrated media presentation in multidisciplinary head and neck oncology meetings.

Multidisciplinary meetings (MDMs) are an essential part of the management of head and neck cancer. Practice care guidance set up by the British Association of Head and Neck Oncologists has recommended that MDMs should have appropriate projection equipment for computer-generated images so that all members of group have access to the same information. The aim of this paper is to review our experience with the integrated visual presentation of head and neck oncology patients and to demonstrate its advantages over conventional approaches. Digital photographs are taken of patients and of their index tumour at presentation or at the time of diagnostic endoscopy. All relevant pre-treatment digitised images from tumour sites and radiological images and histological slides are incorporated into a single presentation using Microsoft PowerPoint software. During the past 2 years, on-line radiological scans have also become accessible for the meeting to aid treatment planning. Subsequently, all peri-operative pictures and post-surgical macroscopic and microscopic histopathological images are added to each patient's presentation, which is then hyperlinked into the agenda. The Guy's and St Thomas' Head and Neck Cancer Centre treats over 400 patients a year, and since 2002, all new cancer diagnoses have been discussed in the weekly MDM as described above. A total of 1,638 presentations have been incorporated in a centralized database that is updated in the event of recurrence, further primary tumours or other clinical developments. Satisfactory documentation and staging of head and neck tumours must include a verbal description, accurate measurement, diagrammatic representation, photographic recording and appropriate radiological imaging. Integrated presentation at MDM collates all relevant findings for clinical management decisions on patients with head and neck cancer. This approach is also an extremely valuable adjunct to long-term clinical monitoring.