Huntington’s disease (HD) is an inherited neurodegenerative disorder characterised by progressive cognitive and motor decline driven by basal ganglia (BG) atrophy. Clinical trials of novel disease-modifying therapies are ongoing, creating a need for sensitive non-invasive imaging biomarkers. Soma and Neurite Density Imaging (SANDI) is a multi-shell diffusion MRI model that estimates intracellular signal fractions from sphere-shaped soma and shows promise as a marker of neurodegeneration. The objectives of this study were to characterise HD-related microstructural abnormalities in the BG using SANDI and to examine relationships between SANDI and volumetric measurements and motor performance. T1- and diffusion-weighted images (b-values 200–6000 s/mm²) were acquired on a 3T Siemens Connectom scanner (300 mT/m) in 56 individuals with HD and 57 age- and sex-matched controls. HD participants completed Quantitative Motor (Q-Motor) tasks, summarised using principal component analysis. SANDI estimated apparent soma and neurite density, apparent soma size, and extracellular signal fraction. Microstructural and volumetric indices were extracted from bilateral caudate, putamen, pallidum and thalamus regions, compared between groups, and correlated with Q-Motor performance. HD was associated with reduced apparent soma density and increased apparent soma size and extracellular signal fraction in the BG but not the thalami. No group differences were present for apparent neurite density. SANDI metrics correlated with Q-Motor performance and explained up to 63% of striatal atrophy in HD. SANDI indices detected HD-related striatal neurodegeneration, explained atrophy, and correlated with motor impairments, demonstrating its potential as an in vivo biomarker and surrogate clinical outcome measure for HD and other neurodegenerative diseases.

Older adults, particularly those with multiple long-term conditions (MLTCs) and other intersectional characteristics, are under-represented in clinical trials. This includes digitally enabled trials as older people may be less likely to engage with digital methods. We embedded a ‘Study Within a Project’ (SWAP) in TIPTOE, a UK randomised controlled trial evaluating a self-management support intervention for older adults with knee and/or hip osteoarthritis and MLTCs. Osteoarthritis is a musculoskeletal condition that is more common with age. The aim of the SWAP was to understand the barriers to including older people with MLTCs, rapidly develop strategies to support inclusion, and provide methodological guidance for future trials including those that are digitally enabled and/or decentralised. The mixed-methods SWAP spanned three trial phases: (1) set-up, process mapping to establish recruitment pathways and characteristics of local clinical populations; (2) pilot, interviews with recruiting staff to explore attitudes, skills and confidence when recruiting participants from under-served groups; (3) transition to main trial, interviews with participants to explore their experiences of taking part. Rapid analysis enabled changes to be made to trial processes during the early stages of the trial. Process mapping identified a diversity of populations and accessibility considerations (e.g. language, unfamiliarity with digital technology). Interviews with recruiting staff (n = 12) identified potential recruitment challenges including concerns that older people may be less inclined to participate due to lower digital literacy or lack of understanding about the trial. Interviews with participants (n = 25) found even those with digital access preferred human support and were concerned about being ‘scammed’ when receiving trial communications. Strategies were introduced such as lowering the eligibility age and creating tailored materials and messaging. Recommendations for future trials include ensuring person-centred support for participants, which has resourcing implications. Embedding a SWAP in TIPTOE enabled a greater understanding about recruiting older people who experience intersectional barriers to inclusion. Approaches to support recruitment included providing telephone support for those less confident navigating digital consent and data collection processes and the creation of guidance for sites. The findings could support future trials to better include older people with MLTCs and other under-served groups. ISRCTN 16024745. Registered on October 16, 2023.

BACKGROUND:Visuospatial working memory (VSWM) deficits are among the earliest cognitive impairments evident in Huntington's disease (HD). They often precede motor symptoms and likely reflect early disruption of cortico-striatal circuits. Both the cognitive components and brain correlates are, however, poorly delineated. OBJECTIVES:This study aims to characterise the progression of VSWM deficits across HD stages and identify their structural brain correlates. METHODS:In this prospective international study, 92 HD mutation carriers (HDmc) (21 premanifest and 71 manifest) and 39 healthy controls underwent cognitive and clinical assessments and structural MRI at baseline; 49 manifest HD and 36 controls completed a 1-year follow-up. VSWM was assessed using the object-location task (OLT), providing continuous measures of location error, object recognition and object-location binding. MRI analyses included caudate, putamen and hippocampal volumes and cortical thickness. RESULTS:We found increased location error and spatial imprecision under high memory load, without binding errors in premanifest HD with an area under the curve of 0.731. Across all HDmc, these location deficits correlated with striatal atrophy and cortical thinning in parietal and middle cingulate regions. Manifest HD individuals exhibited swap errors and hippocampal atrophy. Both location and swap errors worsened over time alongside progressive striatal and hippocampal volume loss. Principal component analysis confirmed a dissociation between spatial location-related deficits (striato-cortically mediated) and binding errors (hippocampally mediated), supporting a hierarchical model of VSWM decline. CONCLUSIONS:HD-related VSWM impairment follows a staged, anatomically dissociable trajectory. The OLT offers sensitive, mechanistic markers of cognitive decline with potential utility for early detection and clinical trial stratification.

OBJECTIVES:Trauma-focused physiotherapy refers to physical interventions and strategies that are used by physical therapists to address the functional and psychological impact of traumatic experiences. The aim of this study was to explore physical therapists' experiences and perspectives when delivering trauma-focused physiotherapy to trauma-exposed refugees. METHODS:Six focus groups, involving 26 physical therapists working in Jordan (n = 13) and Kenya (n = 13) were conducted. A topic guide based on literature, and clinical views was used. Focus group conversations were audio recorded, transcribed and analyzed thematically, with peer checking carried out. RESULTS:Five main themes were identified: (1) intertwined physical, social and psychological symptoms are a key feature of the clinical presentation for trauma-exposed refugees, (2) a client-centered approach that accommodates the complex clinical presentation is critical throughout the care pathway, (3) trauma-focused physiotherapy is recognized as a specialized approach with its own distinct characteristics, (4) therapists and in need of additional self-care, and (5) trauma-focused physiotherapy training gaps are evident. CONCLUSIONS:This study highlights the varied and related symptoms experienced by trauma-exposed refugees, which may be amenable to physiotherapy interventions. Specific knowledge and skills are required by physical therapists of trauma-informed care and trauma-focused physiotherapy to enable the delivery of such interventions within a client-centered biopsychosocial approach. Therapists are exposed to possible negative reactions as they are confronted daily by suffering and grief. Study findings are the first step in increasing our understanding of key processes inherent in delivering a trauma-focused physiotherapy approach.

BackgroundThe development and evaluation of rehabilitation interventions designed to support people with Long Covid (LC) remains an important ongoing priority. Many people with LC experience episodic, debilitating symptoms that can reduce their ability to engage in all areas of activity. The Long CovId personalised Self-managemenT support co-design and EvaluatioN (LISTEN) trial co-designed and evaluated a personalised self-management support intervention to build confidence and support people to live better with LC. This paper describes the context, implementation, mechanisms of impact and impacts from the LISTEN intervention, in comparison with usual LC services accessed within the National Health Service (NHS).MethodsA mixed methods process evaluation was nested within the LISTEN pragmatic, multi-site, randomised controlled trial. Data were collected from sites in England and Wales between September 2022 and January 2024. Observations and focus groups with healthcare practitioners (HCPs) delivering the intervention were conducted to assess fidelity. Standardised implementation measures, focussed on intervention feasibility, acceptability and appropriateness, were gathered from HCPs and intervention participants. Semi-structured interviews were undertaken with a subset of participants across both trial arms. Data were analysed independently using descriptive statistics, or reflexive thematic analyses, and subsequently integrated, drawing upon the Consolidated Framework for Implementation Research v2.FindingsThirty-six HCPs participated in the process evaluation, and 197 intervention participants completed standardised implementation measures. Across both trial arms, 49 participants took part in semi-structured interviews. Six integrated themes were constructed from all data sources describing and illustrating links between the context, implementation, mechanisms of impact and impacts: 'Delivery during uncertainty and ambiguity', 'Diversity and consistency of usual care', 'Drivers for self-care and the impact of self-generated expertise', 'Appropriate if unexpected support', 'Personalisation at the core of success' and 'A spectrum of change'.ConclusionThe LISTEN intervention is an appropriate, feasible intervention for participants and HCPs. The intervention can be delivered to a high level of fidelity following training and with ongoing HCP support. Access, receipt and perceptions of NHS LC services were variable. Personalised, relational interventions, such as LISTEN, can foster favourable impacts on confidence, knowledge and activity and are acceptable and strongly recommended within LC rehabilitation services.Patient or Public ContributionThe study was supported by a patient and public involvement and engagement (PPIE) group from project conception to study end. Using their lived expertise, seven people with LC supported accessible recruitment (e.g., materials), data collection (e.g., topic guides), data interpretation (e.g., theme construction and reviewing findings) and dissemination activities (e.g., online webinars).Trial RegistrationISRCTN36407216, registered 27/01/2022.

The prevalent belief that individuals with Huntington's disease exhibit selfish behaviour, disregarding the thoughts, feelings and actions of others, has been challenged by patient organizations and clinical experts. To further investigate this issue and study whether participants with Huntington's disease can pay attention to others, a joint memory task was carried out in patients with Huntington's disease with and without a partner. This study involved 69 participants at an early stage of Huntington's disease and 56 healthy controls from the UK, France and Germany, who participated in the international Repair-HD multicentre study (NCT03119246). Participants completed a semantic categorization task across three categories: animals, fruits and vegetables and manufactured objects. They performed the task either alone (Alone condition) or with the examiner acting as a partner (Pair condition). In the Pair condition, the participant was assigned one category, their partner was assigned another and one category was left unassigned. Afterwards, participants engaged in a surprise free recall task to remember as many words as possible. Words not assigned to anyone were considered socially irrelevant in contrast to the ones assigned to the participant and to the partner. Both groups demonstrated the expected self-prioritization effect, recalling their assigned words better than their partner's or unassigned words in both conditions. Additionally, a joint memory effect was observed, with better recall for the partner's assigned words than the unassigned words in the Pair condition (controls: difference = 0.45, P < 0.001; participants with Huntington's disease: difference = 0.34, P < 0.001). Socially relevant words were thus better recalled than irrelevant words. The number of recalled words correlated with cognitive performance (all P-values < 0.05) and MRI analysis revealed a negative correlation between the joint memory effect and right orbitofrontal grey matter density in participants with Huntington's disease. These findings challenge the notion that individuals with Huntington's disease display selfish behaviours because of disinterest in others. They show the ability to process information about their partners, implying that their social difficulties may arise from factors other than social cognition deficits. This opens the door for more ecological assessments of social cognition in patients with Huntington's disease.

OBJECTIVE:To determine whether an enhanced community rehabilitation intervention (the Fracture in the Elderly Multidisciplinary Rehabilitation (FEMuR) intervention) was more effective than usual National Health Service care, following surgical repair of hip fracture, in terms of the recovery of activities of daily living (ADLs). DESIGN:Definitive, pragmatic, multisite, parallel-group, two-armed, superiority randomised controlled trial with 1:1 allocation ratio. SETTING:Participant recruitment in 13 hospitals across England and Wales, with the FEMuR intervention delivered in the community. PARTICIPANTS:Patients aged over 60 years, with mental capacity, recovering from surgical treatment for hip fracture and living in their own home prior to fracture. INTERVENTIONS:Usual rehabilitation care (control) was compared with usual rehabilitation care plus the FEMuR intervention, which comprised a patient-held workbook and goal-setting diary to improve self-efficacy, and six additional therapy sessions delivered in-person in the community, or remotely during COVID-19 restrictions (intervention), to increase the practice of exercise and ADL. PRIMARY AND SECONDARY OUTCOME MEASURES:Primary outcome was the Nottingham Extended Activities of Daily Living (NEADL) scale at 12 months. Secondary outcomes included: Hospital Anxiety and Depression Scale, Falls Self-Efficacy-International scale, hip pain intensity, fear of falling, grip strength and Short Physical Performance Battery. Outcomes were collected by research assistants in participants' homes, whenever possible, but had to be collected remotely during COVID-19 restrictions. RESULTS:In total, 205 participants were randomised (n=104 experimental; n=101 control). Trial processes were adversely affected by the COVID-19 pandemic. There were 20 deaths, 34 withdrawals and three lost to follow-up. At 52 weeks, there was no significant difference in NEADL score between the FEMuR intervention and control groups. Joint modelling analysis testing for difference in longitudinal outcome adjusted for missing values also found no significant difference with a mean difference of 0.1 (95% CI -1.1, 1.3). There were no significant between-group differences in secondary outcomes. Sensitivity analyses, examining the impact of COVID-19 restrictions, produced similar results. A median of 4.5 extra rehabilitation sessions were delivered to the FEMuR intervention group, with a median of two sessions delivered in-person. Instrumental variable regression did not find any effect of the amount of rehabilitation on the main outcome. There were 53 unrelated serious adverse events (SAEs) including 11 deaths in the control group: 41 SAEs including nine deaths in the FEMuR intervention group. CONCLUSIONS:The FEMuR intervention was not more effective than usual rehabilitation care. The trial was severely impacted by COVID-19. Possible reasons for lack of effect included limited intervention fidelity (fewer sessions than planned and remote delivery), lack of usual levels of support from health professionals and families, and change in recovery beliefs and behaviours during the pandemic. TRIAL REGISTRATION NUMBER:ISRCTN28376407.

Objectives/HypothesisImprovements in mobile device technology offer new opportunities for remote monitoring of voice for home and clinical assessment. However, there is a need to establish equivalence between features derived from signals recorded from mobile devices and gold standard microphone-preamplifiers. In this study acoustic voice features from android smartphone, tablet, and microphone-preamplifier recordings were compared.MethodsData were recorded from 37 volunteers (20 female) with no history of speech disorder and six volunteers with Huntington's disease (HD) during sustained vowel (SV) phonation, reading passage (RP), and five syllable repetition (SR) tasks. The following features were estimated: fundamental frequency median and standard deviation (F0 and SD F0), harmonics-to-noise ratio (HNR), local jitter, relative average perturbation of jitter (RAP), five-point period perturbation quotient (PPQ5), difference of differences of amplitude and periods (DDA and DDP), shimmer, and amplitude perturbation quotients (APQ3, APQ5, and APQ11).ResultsBland-Altman analysis revealed good agreement between microphone and mobile devices for fundamental frequency, jitter, RAP, PPQ5, and DDP during all tasks and a bias for HNR, shimmer and its variants (APQ3, APQ5, APQ11, and DDA). Significant differences were observed between devices for HNR, shimmer, and its variants for all tasks. High correlation was observed between devices for all features, except SD F0 for RP. Similar results were observed in the HD group for SV and SR task. Biological sex had a significant effect on F0 and HNR during all tests, and for jitter, RAP, PPQ5, DDP, and shimmer for RP and SR. No significant effect of age was observed.ConclusionsMobile devices provided good agreement with state of the art, high-quality microphones during structured speech tasks for features derived from frequency components of the audio recordings. Caution should be taken when estimating HNR, shimmer and its variants from recordings made with mobile devices.

Objective To evaluate the effectiveness of Listen, a self-management support intervention, for people living with long covid who were not in hospital.Design Pragmatic, multicentre, parallel group, randomised controlled trial.Setting Twenty four sites in England and Wales.Participants Identified from long covid clinic waiting lists, word of mouth, and adverts/social media self-referred to the trial, 554 adults with long covid were randomised to receive either the Listen trial intervention or NHS usual care.Interventions The Listen intervention involved up to six one-to-one personalised sessions with trained healthcare practitioners and an accompanying handbook co-designed by people with lived experience and health professionals. Usual NHS care was variable, ranging from no access, access to mobile applications and resources, and to specialist long covid clinics.Main outcome measures The primary outcome was the Oxford participation and activities questionnaire (Ox-PAQ) routine activities scale score at three months assessed in the intention-to-treat population. Secondary outcomes included Ox-PAQ emotional wellbeing and social engagement scale scores, the Short Form-12 (SF-12) health survey, the fatigue impact scale, and the generalised self-efficacy scale at three months. The EuroQol five-dimension five-level (EQ-5D-5L) assessed health utility. Serious adverse events were recorded.Results Between 27 May 2022 and 15 September 2023, 554 people with long covid (mean age 50 (standard deviation 12.3) years; 394 (72.4%) women) were randomly assigned. At three months, participants assigned to the intervention group reported small non-significant improvements in the primary outcome of capacity for daily activities as assessed by Ox-PAQ routine activities scale score (adjusted mean difference −2.68 (95% confidence interval (CI) −5.38 to 0.02), P=0.052) compared with usual NHS care. For the secondary outcomes, people receiving the intervention also reported significant improvements in mental health (Ox-PAQ emotional wellbeing −5.29 (95% CI −8.37 to −2.20), P=0.001; SF-12 2.36 (95% CI 0.77 to 3.96), P=0.004), reductions in fatigue (fatigue impact score −7.93 (95% CI −11.97 to −3.88), P<0.001), and increases in self-efficacy (generalised self-efficacy scale 2.63 (95% CI 1.50 to 3.75), P<0.001). No differences were found in social engagement (−2.07 (95% CI −5.36 to 1.22), P=0.218) or SF-12 physical health (0.32 (95% CI −0.93 to 1.57), P=0.612). No intervention related serious adverse events were reported.Conclusions The personalised self-management support intervention of the Listen trial resulted in non-significant short term improvements in routine activities when compared with usual care. Improvements in emotional wellbeing, fatigue, quality of life, and self-efficacy for people living with long covid were also reported. Physical health and social engagement were not affected by the trial intervention. The limited understanding of how much change is clinically meaningful in this population along with the unblinded design, the use of self-referral as a recruitment method and variable usual care may have introduced unintended bias and thus limits robust conclusions about this intervention. Further research is required to fully establish the impact of the intervention.Trial registration number ISRCTN36407216, ISRCTN registry, registered 27 January 2022.

Background:Proximal femoral (hip) fracture is common, serious and costly. An enhanced community rehabilitation intervention (Fracture in the Elderly Multidisciplinary Rehabilitation) was codeveloped with patients, carers and therapists. Trial methods have been tested previously in a feasibility study. Objective:To determine the effectiveness and cost-effectiveness of the Fracture in the Elderly Multidisciplinary Rehabilitation intervention compared with usual NHS rehabilitation care. To determine the mechanisms and processes that explain the implementation and impacts of the Fracture in the Elderly Multidisciplinary Rehabilitation intervention. Design and methods:Definitive, pragmatic, multisite, parallel-group, two-armed, superiority randomised controlled trial with 1 : 1 allocation ratio. Concurrent economic and process evaluations. Setting:Participant recruitment in 13 hospitals across England and Wales, with the Fracture in the Elderly Multidisciplinary Rehabilitation intervention delivered in the community. Participants:Patients aged over 60 years, with mental capacity, recovering from surgical treatment for proximal femoral fracture, and living in their own home prior to fracture. Interventions:Usual rehabilitation care (control) was compared with usual rehabilitation care plus the Fracture in the Elderly Multidisciplinary Rehabilitation intervention, which comprised a patient-held workbook and goal-setting diary aimed at improving self-efficacy, and six additional therapy sessions delivered in the community (intervention), to increase the practice of exercise and activities of daily living. Primary and secondary outcome measures:Primary effectiveness outcome was the Nottingham Extended Activities of Daily Living scale at 12 months. Secondary outcomes included: Hospital Anxiety and Depression Scale, Falls Self-Efficacy - International scale, hip pain intensity, fear of falling, grip strength and Short Physical Performance Battery. Economic outcomes were EuroQol EQ-5D-3L and Client Service Receipt Inventory. Results:In total, 205 participants were randomised (n = 104 experimental; n = 101 control). Trial processes were adversely affected by the coronavirus disease discovered in 2019 pandemic and the target sample of 446 was not met. By 52 weeks, the intervention group had worse Nottingham Extended Activities of Daily Living scores than the control group (mean difference: -1.9; 95% confidence interval: -3.7 to -0.1), which was not clinically important. Joint modelling analysis testing for difference in longitudinal outcome adjusted for missing values, removed the apparent inferiority of the Fracture in the Elderly Multidisciplinary Rehabilitation intervention with a mean difference of 0.1 (95% confidence interval: -1.1 to 1.3). There was no statistical or clinically significant difference in secondary outcomes between groups. A median of 4.5 extra rehabilitation sessions were delivered to the intervention group, with a median of two sessions delivered in-person. Instrumental variable regression did not find any effect of the amount of rehabilitation on the main outcome. There were 53 unrelated serious adverse events including 11 deaths in the control group: 41 serious adverse events including nine deaths in the intervention group. The mean cost of delivering the Fracture in the Elderly Multidisciplinary Rehabilitation intervention was £444 per participant. The intervention group gained 0.02 (95% confidence interval: -0.036 to 0.076) more quality-adjusted life-years than the control group. This was not clinically or statistically significant. Mean health service use costs were higher in the intervention group. Limitations:The trial was severely impacted by coronavirus disease discovered in 2019. Possible reasons for lack of detected effect included limited intervention fidelity (number and remote mode of delivery), lack of usual levels of support from health professionals and families, and change in recovery beliefs and behaviours during the pandemic. Conclusion:The Fracture in the Elderly Multidisciplinary Rehabilitation intervention was not more effective and had higher costs than usual rehabilitation care. Funding:This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 16/167/09.

Post COVID-19 condition (PCC) or long COVID disproportionately affects racial and ethnic minority communities. There are a growing number of rehabilitation studies for PCC, however, it has yet to be determined whether existing studies take race and ethnicity into account in their study designs and whether existing rehabilitative approaches are equally effective across diverse racial and ethnic groups. The objective of this study was to describe the extent to which rehabilitation studies of PCC consider race and ethnicity in defining eligibility criteria, planning recruitment strategies, designing intervention delivery and adherence promoting approaches, selecting outcome measures, and reporting results. Of the 4845 studies screened, 23 met eligibility criteria and were included in this review. The most common reason for exclusion was a lack of mention of race or ethnicity anywhere within the article. Among the 23 studies included, 13 studies provided data on the race and/or ethnicity characteristics of their sample, with 88% of participants across all of these studies being White. Less than 25% of studies described the incorporation of race and/or ethnicity in their recruitment strategies (n = 3, 13%) or data analysis (n = 5, 22%). Greater racial and ethnic diversity is needed within rehabilitation studies for PCC as there is currently a significant underrepresentation of racial and ethnic minorities in existing studies. Overall, more PCC rehabilitation studies need to incorporate race and ethnicity into their study designs as it is not well understood whether existing rehabilitation strategies are equally effective across different racial and ethnic groups.

Purpose: Changes in voice and speech are characteristic symptoms of Huntington's disease (HD). Objective methods for quantifying speech impairment that can be used across languages could facilitate assessment of disease progression and intervention strategies. The aim of this study was to analyze acoustic features to identify language-independent features that could be used to quantify speech dysfunction in English-, Spanish-, and Polish-speaking participants with HD. Method: Ninety participants with HD and 83 control participants performed sustained vowel, syllable repetition, and reading passage tasks recorded with previously validated methods using mobile devices. Language-independent features that differed between HD and controls were identified. Principal component analysis (PCA) and unsupervised clustering were applied to the language-independent features of the HD data set to identify subgroups within the HD data. Results: Forty-six language-independent acoustic features that were significantly different between control participants and participants with HD were identified. Following dimensionality reduction using PCA, four speech clusters were identified in the HD data set. Unified Huntington's Disease Rating Scale (UHDRS) total motor score, total functional capacity, and composite UHDRS were significantly different for pairwise comparisons of subgroups. The percentage of HD participants with higher dysarthria score and disease stage also increased across clusters. Conclusion: The results support the application of acoustic features to objectively quantify speech impairment and disease severity in HD in multilanguage studies. Supplemental Material: https://doi.org/10.23641/asha.25447171

Wearable devices that monitor sleep stages and heart rate offer the potential for longitudinal sleep monitoring in patients with neurodegenerative diseases. Sleep quality reduces with disease progression in Huntington’s disease (HD). However, the involuntary movements characteristic of HD may affect the accuracy of wrist-worn devices. This study compares sleep stage and heart rate data from the Fitbit Charge 4 (FB) against polysomnography (PSG) in participants with HD. Ten participants with manifest HD wore an FB during overnight hospital-based PSG, and 9 of these participants continued to wear the FB for 7 nights at home. Sleep stages (30-second epochs) and minute-by-minute heart rate were extracted and compared against PSG data. FB-estimated total sleep and wake times and sleep stage times were in good agreement with PSG, with intraclass correlations of 0.79–0.96. However, poor agreement was observed for wake after sleep onset and the number of awakenings. FB detected waking with 68.6 ± 15.5

AimThere is an absence of evidence generated in a UK context to support interventions based on occupational therapists' core skills for people living with early-stage dementia. To inform the development of a programme theory and a future evaluation, this paper aimed to describe real-world (routine) community-based occupational therapy interventions for this population and contextual barriers.MethodOccupational therapy practitioners (n = 21) from five Health Boards in Wales, UK participated in semi-structured interviews (n = 17) which were audio recorded, transcribed, and analysed thematically.FindingsThe availability of, and access to, real-world community-based interventions was variable, and associated with multilevel contextual barriers (resources, understanding of dementia specialist occupational therapy, professional influence, and evidence base). Where available and accessible, contents comprised a pre-intervention component (relational work, assessment, and goal setting) and intervention component (personalised problem-solving and coping strategies, emotional support, and advice and signposting), to meet needs associated with everyday activities and poor wellbeing. Variation in mode, duration, contents, and who received interventions, was associated with contextual barriers.ConclusionFindings indicate that the development of an intervention programme theory and future evaluation design, will need to account for the impact context may have on the variability of real-world intervention characteristics, and how this in turn may influence outcomes.

Introduction Huntington’s disease (HD) is an inherited neurodegenerative disease causing progressive cognitive and motor decline, largely due to basal ganglia (BG) atrophy. Rhythmic training offers promise as therapy to counteract BG-regulated deficits. We have developed HD-DRUM, a tablet-based app to enhance movement synchronisation skills and improve cognitive and motor abilities in people with HD. This paper outlines a randomised controlled unblinded trial protocol to determine the feasibility of a larger effectiveness trial for HD-DRUM. Additionally, the trial investigates cognitive and motor function measures, along with brain microstructure, aiming to advance our understanding of the neural mechanisms underlying training effects.Methods, design and analysis 50 individuals with HD, confirmed by genetic testing, and a Total Functional Capacity (TFC) score of 9–13, will be recruited into a two-arm randomised controlled feasibility trial. Consenting individuals with HD will be randomised to the intervention group, which entails 8 weeks of at-home usage of HD-DRUM or a usual-activity control group. All participants will undergo cognitive and motor assessments, alongside ultra-strong gradient (300 mT/m) brain microstructural MRI before and after the 8-week period. The feasibility assessment will encompass recruitment, retention, adherence and acceptability of HD-DRUM following prespecified criteria. The study will also evaluate variations in cognitive and motor performance and brain microstructure changes resulting from the intervention to determine effect size estimates for future sample size calculations.Ethics and dissemination The study has received favourable ethical opinion from the Wales Research Ethics Committee 2 (REC reference: 22/WA/0147) and is sponsored by Cardiff University (SPON1895-22) (Research Integrity, Governance and Ethics Team, Research & Innovation Services, Cardiff University, second Floor, Lakeside Building, University Hospital of Wales, Cardiff, CF14 4XW). Findings will be disseminated to researchers and clinicians in peer-reviewed publications and conference presentations, and to participants, carers and the general public via newsletters and public engagement activities. Data will be shared with the research community via the Enroll-HD platform.Trial registration number ISRCTN11906973.

Background: Clinical guidelines recommend that people with Huntington’s disease (HD) should exercise to maintain/improve fitness and motor function, yet physical activity levels remain low in this group. Promotion of physical activity is often via care partners with little evidence that they are supported in this role. Objective: The aim was to co-design a resource for care partners of people with HD to support promotion of physical activity. Methods: A four-step co-design approach was used to develop a care partner resource. Five care partners took part in an online workshop exploring experiences and the knowledge, support and skills needed by care partners to promote physical activity. A co-design team (n = 7) developed a prototype that was user tested by three people who had attended the workshop. Findings from user testing were used to develop the final resource. Results: An easy to read, image-based prototype was developed that contained tips on planning activity, safety and activity examples. User testing identified the need for grouping of activities suitable for 10, 20, and 30 minutes of available time, information on maintaining and improving activity and re-organization of information to support engagement of activity. Conclusions: A resource for care partners that has been translated into seven languages was developed to promote physical activity. User testing indicated confidence in using the resource and appreciation of the autonomy provided to the person with HD to plan activities. Further work is needed to evaluate the impact of the resource in promotion of physical activity and the impact on care partner burden.