A thematic synthesis of the experiences of adults living with hemodialysis

Background and objectives In-center dialysis patients spend significant amounts of time on the dialysis unit; additionally managing ESKD affects many aspects of life outside the dialysis unit. To improve the care provided to patients requiring hemodialysis their experiences and beliefs regarding treatment must be understood. This systematic review aimed to synthesise the experiences of patients receiving in-center hemodialysis. Design, setting, participants, and measurements Embase, MEDLINE, CINAHL and PsychINFO, Google scholar and reference lists were searched for primary qualitative studies exploring the experiences of adult patients receiving treatment with in-center hemodialysis. A thematic synthesis was conducted. Results 17 studies involving 576 patients were included in the synthesis. 4 analytical themes were developed. The first theme “a new dialysis dependent self” describes the changes in identity and perceptions of self that could result from dialysis dependence. The second theme, “a restricted life”, describes the physical and emotional constraints patients described as a consequence of their dependence. Some patients reported strategies that allowed them to regain a sense of optimism and influence over the future and these contributed to the third theme, “regaining control”. The first three themes describe a potential for change through acceptance, adaption and re-gaining a sense of control. The final theme, “relationships with health professionals” describes the importance of these relationships for in-center patients and their influence on perceptions of power and support. These relationships are seen to influence the other three themes through information sharing, continuity and personalized support. Conclusions This synthesis has resulted in a framework that can be utilized to consider interventions to improve patients’ experiences of in-center hemodialysis care. Focusing on interventions that are incorporated into the established relationships patients have with their health care professionals may enable patients’ to progress towards a sense of control and improve satisfaction with care

Feasibility and acceptability of a multi-components intervention (PDConnect) to support physical activity in people living with Parkinson's: a mixed methods study.

The benefits of physical activity (PA) for people with Parkinson's are widely acknowledged. To date, research has focussed on the effectiveness of PA interventions, with limited research exploring the optimum means of supporting people living with Parkinson's to change their PA behaviour. A narrative review was undertaken to provide context and underpin the development of a multi-component PA intervention (PDConnect) for people with Parkinson's. PDConnect combines specialist physiotherapy, group-based PA, and self-management with the aim of promoting increased PA and PA self-management. This study was undertaken to determine the feasibility and acceptability of the PDConnect intervention. This study adopted a pragmatist worldview and employed mixed methods. A convergent sequential mixed-methods design was adopted and delivered online via Microsoft Teams. A convenience sample of 31 people with Parkinson's were recruited and randomised into two groups: (i) the usual care group received standard physiotherapy once a week for six-weeks. (ii) the PDConnect group received once a week for six weeks physiotherapy that combined PA, education and behaviour change interventions delivered by a Parkinson's specialist physiotherapist. This was followed by 12 weekly sessions of group-based PA by a fitness instructor specially trained in Parkinson's. Participants were then contacted by the fitness instructor once a month for three months to support PA engagement. Primary feasibility data were collected during the study, with acceptability assessed via semi-structured interviews. Secondary outcomes encompassing motor, non-motor, PA, and health and well-being measures were assessed at baseline, and at six, 18 and 30 weeks. PDConnect was shown to be feasible and safe. The sample was recruited in 12 weeks, and the retention rate was 74%. Outcome measure response and activity diary return rate was high (>95%, 84% respectively). PDConnect attendance was high: 100% for the physiotherapy component and 83% for the group-based exercise component. Participants were very satisfied with PDConnect and perceived that participation increased exercise confidence and knowledge and understanding of Parkinson's. Participation positively impacted Parkinson's symptoms, with perceived improvements in flexibility, muscle strength, PA levels and endurance. Fifty percent of participants receiving PDConnect reported that they were much improved compared to 10% in the usual care group. PDConnect study resources were deemed acceptable. Intervention fidelity was high, with 89% of the physiotherapy and 88% of the group-based exercise delivered as planned. All progression criteria were met, except for participant retention which fell one percent below the a priori criterion. PDConnect is feasible to deliver and rated as highly acceptable among people with Parkinson's. A large-scale trial is required to fully evaluate the effectiveness of PDConnect. Sampling within a future trial needs to include under-represented groups and broader cultural and ethical diversity. In addition, appropriate funding is required to minimise digital exclusion and optimise digital literacy. Minor modifications to the participant manual to support personalisation, and further consideration of type of PA monitor is also recommended. Further consultation with the Parkinson's community is required to guide how to optimise social connection when delivering PA online and to inform the selection of future outcome measures

Procurement from local producers for food service in primary and secondary school settings: A scoping review

Issue addressed: Australian school canteen guidelines do not broadly incentivise procuring food from local producers, despite evidence of this occurring abroad. This scoping review aims to investigate what is known about local food procurement for school foodservice. Methods: A scoping review of peer-reviewed articles published since 2000 was undertaken using MEDLINE, CINAHL and Scopus. Results: Twenty-one studies met the inclusion criteria. Local food was generally perceived as fresher and more nutritious. Small, positive impacts on fruit and vegetable intake have been demonstrated when food is procured locally. Challenges identified included concerns around food safety, varied availability, time spent coordinating food supply, lack of incentive from regional or national guidelines, inadequate kitchen facilities and budget constraints. Conclusions: There is no universal definition or standard for procuring ‘local food’. The main motivation for local food procurement was a sense of social responsibility, however there are barriers, including cost, facilities and food safety. Purchasing food locally holds potential to benefit the local economy but government funding and policy supporting local and small-scale producers is an important enabler. So what?: Government support to build stakeholder capacity is important in establishing and maintaining these programmes and would be crucial in achieving change in Australian schools. Investigating feasibility of a national school lunch service would be beneficial, as these programmes may have merit not just in feeding children but also in supporting the local economy. Further research is warranted in this area

Guidance on Stimulus Materials

PACHELBEL WP4 “Stimulus Materials” uses findings from WP3 (Policy Assumptions) and from additional sources to prepare stimulus materials for the group-based process “STAVE” implemented in WP5. The output was material to inform and stimulate the group-based process. The material was of two types: a set of questionnaires common to all partners (EVOC/CAPA/SIMI questionnaires), and material that is issue-specific and individually produced for each country. EVOC/CAPA/SIMI short questionnaires serve as a comparative tool between countries, giving insight on the social construction of “sustainable consumption” across the PACHELBEL population. Partners asked participants to fill out the set individually at the first meeting of the STAVE group, results were then analyzed and data were fed back for discussion by group participants at their second meeting. A “re-test” was then conducted at the third of three group meetings. The present report details the representations revealed through this methodology – but moreover the impact of applying such a technique in STAVE groups in France, Germany, Romania, Spain, Sweden and the UK (where the methodology was slightly altered). The issue-and-country-specific material consists of an informative simulated newspaper article on the particular issue addressed in a given STAVE process, and/or other materials (for example, humorous drawings). The report details how this material was developed, and the experience of applying these stimulus materials in each country. On this basis, guidance for future STAVE processes is offered. Foremost among observations is that PACHELBEL stimulus materials serve a purpose that is distinct from that of “group exercises” as developed in WP5. The materials contributing to the formation of a group identity, a reflexive group norm, and a shared information basis. As such, stimulus materials prepare the group for a cooperative investigative process

The Edinburgh Cognitive and Behavioral ALS Screen (ECAS) in frontotemporal dementia

To examine the usefulness of the Edinburgh Cognitive and Behavioral Amyotrophic Lateral Sclerosis (ALS) Screen (ECAS) as a cognitive screening tool for the detection of behavioral variant frontotemporal dementia (bvFTD). A secondary aim was to determine whether people with FTD combined with ALS (ALS-FTD) exhibit a similar ECAS profile to that of people with bvFTD alone. Methods: Patients with ALS-FTD and bvFTD and healthy controls were recruited. Participants were administered the ECAS, which comprises tests of language, verbal fluency, executive functions, memory, and visual-spatial functions. They also carried out analogous, full-length cognitive tests that examine naming, spelling, sentence completion, and social cognition skills. Results: The study cohort comprised 20 ALS-FTD patients, 23 with bvFTD, and 30 controls. Highly significant group differences were elicited for all cognitive domains, reflecting poorer performance in patients compared to controls. No significant differences in overall test scores were found between ALS-FTD and bvFTD patients, although ALS-FTD patients showed a higher frequency of impairment on verbal fluency. Correlative analyses revealed inter-relationships in patients (but not controls) between scores in different domains, most marked in bvFTD. There were strong correlations between performance on ECAS subtests and analogous cognitive tasks. Conclusion: The ECAS is a sensitive and valuable tool for the assessment of FTD. Executive, language and behavioral breakdown may, however, compromise performance in other cognitive domains, reducing the specificity of the ‘frontotemporal’ cognitive profile. Subtle differences observed between ALS-FTD and bvFTD raise questions regarding the precise relationship between bvFTD with and without ALS

Redefining the multidimensional clinical phenotypes of frontotemporal lobar degeneration syndromes

The syndromes caused by frontotemporal lobar degeneration (FTLD) have highly heterogenous and overlapping clinical features. There has been great progress in the refinement of clinical diagnostic criteria in the last decade, but we propose that a better understanding of aetiology, pathophysiology and symptomatic treatments can arise from a transdiagnostic approach to clinical phenotype and brain morphometry. In a cross-sectional epidemiological study, we examined 310 patients with a syndrome likely to be caused by frontotemporal lobar degeneration, including behavioural variant frontotemporal dementia (bvFTD), the non-fluent (nfvPPA), semantic (svPPA) variants of primary progressive aphasia, progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). We also included patients with logopenic primary progressive aphasia (lvPPA) and those who met criteria for PPA but not one of the three subtypes. To date, forty-nine patients have a neuropathological diagnosis. A principal component analysis identified symptom dimensions that broadly recapitulated the core features of the main clinical syndromes. However, the subject-specific scores on these dimensions showed considerable overlap across the diagnostic groups. Sixty-two percent of participants had phenotypic features that met the diagnostic criteria for more than one syndrome. Behavioural disturbance was prevalent in all groups. Forty-four percent of patients with CBS had PSP-like features and thirty percent of patients with PSP had CBS-like features. Many patients with PSP and CBS had language impairments consistent with nfvPPA while patients with bvFTD often had semantic impairments. Using multivariate source-based morphometry on a subset of patients (n=133), we identified patterns of co-varying brain atrophy that were represented across the diagnostic groups. Canonical correlation analysis of clinical and imaging components found three key brain-behaviour relationships that revealed a continuous spectrum across the cohort rather than discrete diagnostic entities. In the forty-six patients with longitudinal follow up (mean 3.6 years) syndromic overlap increased with time. Together, these results show that syndromes associated with FTLD do not form discrete mutually exclusive categories from their clinical features or structural brain changes, but instead exist in a multidimensional spectrum. Patients often manifest diagnostic features of multiple disorders and deficits in behaviour, movement and language domains are not confined to specific diagnostic groups. It is important to recognise individual differences in clinical phenotype, both for clinical management and to understand pathogenic mechanisms. We suggest that the adoption of a transdiagnostic approach to the spectrum of FTLD syndromes provides a useful framework with which to understand disease progression, heterogeneity and treatment.This work was funded by the Holt Fellowship (AGM), British Academy (KAT, PF160048), Wellcome Trust (JBR, 103838), the PSP Association, the Medical Research Council, the National Institute for Health Research Cambridge Biomedical Research Centre and Cambridge Brain Bank; and the Cambridge Centre for Parkinson Plus

Emollient bath additives for the treatment of childhood eczema (BATHE): multi-centre pragmatic parallel group randomised controlled trial of clinical and cost-effectiveness

Objectives: To determine the clinical and cost-effectiveness of including emollient bath additives in the management of childhood eczema. Trial design: Pragmatic randomised open-label superiority trial with two parallel groups. Setting and recruitment: 96 general practices in Wales, West of England and Southern England. Invitation by personal letter or opportunistically by usual clinical team. Participants: Children were eligible to participate if aged over 12 months and less than 12 years, fulfilling UK Diagnostic Criteria for Atopic Dermatitis. Children with inactive or very mild eczema (5 or less on Nottingham Eczema Severity Scale) were excluded, as were children who bathed less than once a week, or whose carers were not willing to accept randomisation. 483 were randomised and one withdrew, leaving 482 children in the trial: 51% female, 84% white, mean age 5 years. Interventions: The intervention group were prescribed emollient bath additives by their usual clinical team and were asked to use them regularly for 12 months. The control group were asked to use no bath additives for 12 months. Both groups continued with standard eczema management and were given standardised advice on how to wash. Primary outcome: Eczema control measured by Patient Oriented Eczema Measure (POEM, range 0-28) weekly for 16 weeks. Secondary outcomes: Eczema severity over 1 year (4-weekly POEM from baseline to 52 weeks); number of eczema exacerbations resulting in primary healthcare consultation; disease-specific quality of life (QOL) (Dermatitis Family Impact); generic QoL (Child Health Utility-9D); resource utilisation; type and quantity of topical corticosteroid/calcineurin inhibitors prescribed. Randomisation: 483 children were randomised (1:1) using online software, stratified by recruiting centre. Results: 95.6% (461/482) of participants completed at least one post-baseline POEM, so were included in the analysis, and 76.8% (370/482) of participants completed questionnaires for more than 80% of the time points for the primary outcome (12/16 weekly questionnaires to 16 weeks). The mean Baseline POEM was 9.5 (s.d. 5.7) in the bath additives group and 10.1 (s.d. 5.8) in the no bath additives group. The mean POEM over the 16-week period was 7.5 (s.d. 6.0) in the bath additives group and 8.4 (6.0) in the no bath additives group. There was no statistically significant difference in weekly POEM scores between groups over 16 weeks. After controlling for baseline severity and confounders (ethnicity, topical corticosteroid use, soap substitute use) and allowing for clustering of participants within centres and responses within participants over time, POEM scores in the no bath additive group were 0.41 points higher than in the bath additive group (95% CI -0.27 to 1.10), below the published minimal clinically important difference for POEM of 3 points. There was no difference between groups in secondary outcomes, economic outcomes or in adverse effects. Conclusions: This trial found no evidence of clinical benefit from including emollient bath additives in the standard management of childhood eczema. Further research is needed into optimal regimens for leave-on emollient and use of soap substitutes for children with eczema