Clinical trajectories of hand function impairment in systemic sclerosis: an unmet clinical need across disease subsets.

BACKGROUND: Hand involvement is an early manifestation of systemic sclerosis (SSc), culprit of diagnosis and classification, and recognised major driver of disability. Impairment of hand function burdens both limited and diffuse cutaneous subsets and therefore could be targeted as 'basket' endpoint in SSc. Nevertheless, its natural history in current standard of care is not well characterised, limiting the design of targeted trials. The aim of this study is to describe prevalence, natural history and clinical factors associated with hand function deterioration in a longitudinal, multicentre, observational SSc cohort. METHODS: Hand function was captured through the validated Cochin Hand Function Scale in patients consecutively enrolled in a multicentre observational study and observed over 24 months. Minimal clinically important differences and patient acceptable symptom state were analysed as previously described. RESULTS: Three hundred and ninety-six consecutive patients were enrolled from 10 centres; 201 with complete follow-up data were included in the analysis. Median (IQR) disease duration was 5 (2-11) years. One hundred and five (52.2%) patients reported clinically significant worsening. Accordingly, the proportion of patients reporting unacceptable hand function increased over 2 years from 27.8% to 35.8% (p<0.001). Least absolute shrinkage and selection operator analysis identified male gender, disease subset, Raynaud's Condition Score, tenosynovitis and pain, as some of the key factors associated with worsening hand involvement. CONCLUSIONS: Hand function deteriorates over time in more than 50% of SSc patients despite available therapies. The analysis of factors associated with hand function worsening supports the involvement of both inflammation, vascular and fibrotic processes in hand involvement, making it a hallmark clinical manifestation of SSc. Our data are poised to inform the design of intervention studies to target this major driver of disability in SSc.

A mixed-methods evaluation of a health-promoting café located in a small health service in rural Victoria, Australia.

INTRODUCTION: Residents of rural areas internationally typically experience chronic disease risk profiles worse than city dwellers. Poor diet, a key driver of chronic disease, has been associated with unhealthy food environments, and rural areas often experience limited access to healthy, fresh and affordable food. OBJECTIVE: This study aimed to evaluate the first three years of a health promoting social enterprise café established in a small rural health service. DESIGN: A mixed-methods evaluation study. Quantitative sales data, surveys and key informant interviews that included both quantitative and qualitative responses. FINDINGS: Three years of sales data were included; 111customer surveys and five key informant interviews were conducted. Food and beverages on displayed and sold consistently met or exceeded the healthy criteria set by policy. Stakeholders supported the traffic light system, the social enterprise model and rated the likelihood of sustainability of the café as high. DISCUSSION: Customers used the 'traffic light' system to inform food choices, placed value on the warmth of the staff and on the welcoming environment created through the social enterprise model. Resources remain tight although all stakeholders are committed to the sustainability of the YarriYak café. CONCLUSION: The study shows the acceptability, feasibility and sustainability of a health promoting social enterprise café in a rural area.

Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial.

BACKGROUND: Informal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed. OBJECTIVE: This study's aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app-the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts. METHODS: A stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist. RESULTS: Between August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study. CONCLUSIONS: The Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/33023.

A rural community moves closer to sustainable obesity prevention - an exploration of community readiness pre and post a community-based participatory intervention.

BACKGROUND: Understanding levels of community readiness can result in prevention efforts that align with communities' ability and capacity for change and, therefore, be more effective and sustainable. Our study aimed to use baseline (pre-intervention) community readiness scores to assist with the development of obesity prevention strategies, and to assess changes in community readiness over time (pre/post- intervention), to provide evidence of intervention impact. METHOD: Our study was located in a rural and remote area of Victoria, Australia. Community readiness was part of a broader obesity prevention intervention designed to create healthier food and physical activity environments through the combination of systems thinking and collaborative community-led solutions. Interviews were conducted using the community readiness to change tool in 2016 (pre) and 2018 (post) with a community representative sample. Baseline data informed the development of community relevant strategies and the pre/post results formed part of the overall evaluation. RESULTS: The tool generated both quantitative and qualitative (quotes) data. A final readiness score was calculated that corresponded to one of the nine stages of readiness. Four of the five domains of the community readiness to change tool showed statistically significant improvements over time (p < 0.05): knowledge of effort, knowledge of issue, community climate, and leadership. The resources domain that did not improve pre/post intervention. CONCLUSION: Community readiness to change interviews, pre- and post- intervention, provided essential information related to the appropriate targeting and pitch of the prevention strategies, as well as providing an overall evaluation of the positive movement in the community's readiness to implement change.

An Evidence-based Approach to Developing the Collaborative, Client-Centred Nutrition Education (3CNE) Framework and Practice Points.

PURPOSE: The purpose of this, the third phase of a 3-phase research project, was to develop guidelines for client-centred nutrition education (NE). METHODS: A 3-phase study was conducted using a progressive development design, where each phase informed the subsequent phase. Phase 1 was a national online survey of dietitians' perceptions of consumers' NE needs and preferences; results informed the Phase 2 national online survey of consumers about their NE needs and preferences. Phase 3 involved national 2-part teleconference consultations with dietitians to discuss implications of the Phase 2 findings for NE practice. This paper is the report of Phase 3. RESULTS: Discussion group participants were 22 dietitians from around Canada who had been in practice for an average of 14.5 years. Discussions resulted in the development of the Collaborative Client-Centred Nutrition Education (3CNE) conceptual framework and related Practice Points that explicate the complexity of NE practice. CONCLUSION: The 3CNE framework and Practice Points provide a means to inform precepting students and interns, and for use in planning for the professional development of practicing dietitians on providing client-centred NE.

Caring for people with dementia in residential aged care: successes with a composite person-centered care model featuring Montessori-based activities.

Person-centered models of dementia care commonly merge aspects of existing models with additional influences from published and unpublished evidence and existing government policy. This study reports on the development and evaluation of one such composite model of person-centered dementia care, the ABLE model. The model was based on building the capacity and ability of residents living with dementia, using environmental changes, staff education and organizational and community engagement. Montessori principles were also used. The evaluation of the model employed mixed methods. Significant behavior changes were evident among residents of the dementia care Unit after the model was introduced, as were reductions in anti-psychotic and sedative medication. Staff reported increased knowledge about meeting the needs of people with dementia, and experienced organizational culture change that supported the ABLE model of care. Families were very satisfied with the changes.

Experiences of people of Acadian descent receiving hemodialysis in southwest Nova Scotia.

We conducted a group interview with five hemodialysis patients of Acadian descent. Our purpose was to learn about their intakes of Acadian foods so we could tailor our advice for other Acadian patients receiving hemodialysis. This approach builds on evidence that addressing cultural aspects of food choice and aligning dietary recommendations with usual intakes create optimal conditions for diet adherence while preserving personal habits and heritage. In this study, "the Acadian diet" held multiple meanings for different participants, participants varied in their intakes of traditional Acadian foods, intakes of traditional Acadian foods were decreasing in younger generations, and the desire to preserve kidney function had priority over eating much-loved traditional foods. These findings support the practices of individualized nutritional and dialysis care and discourage generalized nutrition messages based on assumptions of homogeneity of all people within a cultural group.

Dietitians' perceptions of precepting: knowledge, skills, attitudes, barriers, and training.

PURPOSE: The extent to which dietitians agreed or disagreed with key informants' perceptions of precepting knowledge, skills, and attitudes (KSA), training needs, and barriers was determined. METHODS: A 98-item survey was developed and distributed electronically to Dietitians of Canada members (n=5376). RESULTS: Of the 750 respondents who completed the survey (14% response rate), more than 95% agreed that preceptors should have knowledge of promoting learning and skills acquisition, and of learner assessment and evaluation. More than 90% of respondents agreed that preceptors should have skills in planning, teaching, coaching, research, facilitation, and evaluation. Differences in respondents' perceptions of preceptor participation in practice-based research differed with years of experience. Respondents with fewer than five years of experience had a higher level of agreement that preceptors should participate in practice-based research than did those with more experience (P<0.05). Respondents indicated that barriers to precepting training were insufficient time (93%) and work environments not supportive of precepting (64%). CONCLUSIONS: The findings articulate the KSA, training needs, and barriers to precepting considered significant for dietitian preceptors. The results are important for the advocacy for resources to support the training and development of preceptors, upon whom sustainability of the profession depends.

Toward evidence-based, client-centred nutrition education guidelines: dietitian and consumer survey results.

PURPOSE: Dietitian and consumer perspectives on nutrition education needs and preferences were explored, as these relate to health status METHODS: Phases 1 and 2 of a three-phase, mixed-methods study are reported. Phase 1 was a national online survey of dietitians, which was designed to inform the development of a consumer survey (Phase 2). Consumers responded to an online survey about their demographics, medical conditions, and nutrition education needs (what they wanted to learn) and preferences (how they wanted to learn). Phase 3 involved teleconferenced discussion groups with dietitians across Canada to develop guidelines for nutrition education. RESULTS: Dietitian respondents (n=441) perceived that consumer health status was important in predicting needs and preferences for nutrition education; emotional support was considered most important for consumers with life-altering medical conditions. Consumers (n=680) expressed interest in an array of nutrition education approaches; cooking tips, recipes, and supplement advice were the most popular. Respondents with and without medical conditions had similar nutrition education needs and preferences. CONCLUSIONS: Because of the complexity of nutrition education and consumers' preference for a spectrum of approaches and delivery methods, evidence-based nutrition education guidelines are important to inform dietetics training for the provision of client-centred nutrition education.

Dietitian preceptor knowledge, skills, attitudes, and training: key informant perceptions.

PURPOSE: Through consultation with Canadian dietitian informants, we aimed to identify the desired knowledge, skills, and attitudes (KSA) for preceptors, training opportunities, and the barriers that prevent preceptor training. METHODS: In this qualitative study, an open-ended survey was sent electronically to 100 key informants across Canada. Informants had experience as preceptors or with dietitian preceptors. Informants were asked to reflect upon the desired KSA, training needs, and barriers to training for dietitian preceptors. Categories of responses under each of these headings were developed on the basis of informants' responses. RESULTS: Forty-nine key informants completed the survey, for a 49% response rate. Of the respondents, 41% (20/49) were in clinical practice and 35% (17/49) worked in community/public health areas. The knowledge and skills domains consisted of themes related to teaching and learning, including assessing, planning, and evaluating. Attitudes expressed included considering learners as colleagues and the training of learners as a professional responsibility. Perceived barriers to training preceptors included workload demands and a lack of recognition from peers and employers for this work. Dietitian preceptor training opportunities ranged from no training to formal programs. CONCLUSIONS: These findings are integral to the basic understanding of the desired KSA and training needs of Canadian dietitian preceptors.

Exploring the use of videotaped objective structured clinical examination in the assessment of joint examination skills of medical students.

OBJECTIVE: Objective structured clinical examination (OSCE) is a key part of medical student assessment. Currently, assessment is performed by medical examiners in situ. Our objective was to determine whether assessment by videotaped OSCE is as reliable as live OSCE assessment. METHODS: Participants were 95 undergraduate medical students attending their musculoskeletal week at Freeman Hospital, Newcastle (UK). Student performance on OSCE stations for shoulder or knee examinations was assessed by experienced rheumatologists. The stations were also videotaped and scored by a rheumatologist independently. The examinations consisted of a 14-item checklist and a global rating scale (GRS). RESULTS: Mean values for the shoulder OSCE checklist were 17.9 by live assessment and 17.4 by video (n = 50), and 20.9 and 20.0 for live and video knee assessment, respectively (n = 45). Intraclass correlation coefficients for shoulder and knee checklists were 0.55 and 0.58, respectively, indicating moderate reliability between live and video scores for the OSCE checklists. GRS scores were less reliable than checklist scores. There was 84% agreement in the classification of examination grades between live and video checklist scores for the shoulder and 87% agreement for the knee (kappa = 0.43 and 0.51, respectively; P < 0.001). CONCLUSION: Video OSCE has the potential to be reliable and offers some advantages over live OSCE including more efficient use of examiners' time, increased fairness, and better monitoring of standards across various schools/sites. However, further work is needed to support our findings and to implement and evaluate the quality assurance issues identified in this work before justifiable recommendations can be made.