Development and Delivery of a Physical Activity Intervention for People With Huntington Disease

Quinn, Lori; Trubey, Rob; Gobat, Nina; Dawes, Helen; Edwards, Rhiannon Tudor; Jones, Carys; Townson, Julia; Drew, Cheney; Kelson, Mark; Poile, Vincent; Rosser, Anne Elizabeth; Hood, Kerenza; Busse, Monica

doi:10.1097/npt.0000000000000119

Cited by 25 publications

(33 citation statements)

References 31 publications

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“…This finding is consistent with ataxia research more broadly, that has shown higher intensity rehabilitation to be more effective (60 min, 2 days per week) than less intensive training 11. Interestingly, no studies evaluated incidental physical activity or participants’ level of activity outside of the intervention, unlike studies in other progressive conditions including Huntington’s disease (HD), multiple sclerosis and Parkinson’s disease (PD) literature 71 72. Programmes and interventions that promote participation and an active lifestyle have well known benefits on mobility and well-being for individuals living with neurological disorders 73.…”

Section: Discussionsupporting

confidence: 81%

What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia

Carr

Lalara²,

Lalara³

et al. 2019

BMJ Open

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ObjectivesMachado-Joseph disease (MJD) is the most common spinocerebellar ataxia worldwide. Prevalence is highest in affected remote Aboriginal communities of the Top End of Australia. Aboriginal families with MJD from Groote Eylandt believe ‘staying strong on the inside and outside’ works best to keep them walking and moving around, in accordance with six key domains that form the ‘Staying Strong’ Framework. The aim of this current study was to review the literature to: (1) map the range of interventions/strategies that have been explored to promote walking and moving around (functional mobility) for individuals with MJD and; (2) align these interventions to the ‘Staying Strong’ Framework described by Aboriginal families with MJD.DesignScoping review.Data sourcesSearches were conducted in July 2018 in MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Databases.Eligibility criteria for selecting studiesPeer-reviewed studies that (1) included adolescents/adults with MJD, (2) explored the effects of any intervention on mobility and (3) included a measure of mobility, function and/or ataxia were included in the review.ResultsThirty studies were included. Few studies involved participants with MJD alone (12/30). Most studies explored interventions that aligned with two ‘Staying Strong’ Framework domains, ‘exercising your body’ (n=13) and ‘searching for good medicine’ (n=17). Few studies aligned with the domains having ‘something important to do’ (n=2) or ‘keeping yourself happy’ (n=2). No studies aligned with the domains ‘going country’ or ‘families helping each other’.ConclusionsEvidence for interventions to promote mobility that align with the ‘Staying Strong’ Framework were focused on staying strong on the outside (physically) with little reflection on staying strong on the inside (emotionally, mentally and spiritually). Findings suggest future research is required to investigate the benefits of lifestyle activity programmes that address both physical and psychosocial well-being for families with MJD.

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Section: Discussionsupporting

confidence: 81%

What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia

Carr

Lalara²,

Lalara³

et al. 2019

BMJ Open

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“…Sixteen participants completed the intervention, and in all cases the coaches successfully uploaded an audio-recording via the ENGAGE-HD database. Audio-recordings captured by the iPad device were of sufficient sound quality to be accurately transcribed, and formed the basis of further fidelity analysis reported elsewhere [6]. …”

Section: Resultsmentioning

confidence: 99%

“…Additionally, the individualised permissions’ settings designed for each user enabled intervention coaches to access confidential feedback on their delivery of the intervention through the system, which they could refer back to at any time. We believe that this aspect of the system was key to the high levels of intervention fidelity in the trial which we have reported elsewhere [6]. …”

Section: Discussionmentioning

confidence: 99%

“…In general, the feedback we received from site staff through the telephone interviews conducted was positive and the move from paper CRF data collection to eSource was widely welcomed. Intervention coaches were particularly receptive to the use of Skype® and audio-recordings for fidelity monitoring and found the feedback received useful for intervention delivery [6]. …”

Section: Discussionmentioning

confidence: 99%

“…Intervention coaches could record the audio of their interaction with the participant using the iPad, which was then securely uploaded to the database before being deleted according to data protection strictures. The audio-recording was rated for fidelity of the delivery of the intervention in line with the theoretical framework on which it was developed [6]. Feedback from the intervention trainer was delivered to intervention coaches via Skype® on the tablet device.…”

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Integrating technology into complex intervention trial processes: a case study

Drew

Poile

Trubey

et al. 2016

Trials

Self Cite

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BackgroundTrials of complex interventions are associated with high costs and burdens in terms of paperwork, management, data collection, validation, and intervention fidelity assessment occurring across multiple sites. Traditional data collection methods rely on paper-based forms, where processing can be time-consuming and error rates high. Electronic source data collection can potentially address many of these inefficiencies, but has not routinely been used in complex intervention trials. Here we present the use of an on-line system for managing all aspects of data handling and for the monitoring of trial processes in a multicentre trial of a complex intervention.We custom built a web-accessible software application for the delivery of ENGAGE-HD, a multicentre trial of a complex physical therapy intervention. The software incorporated functionality for participant randomisation, data collection and assessment of intervention fidelity. It was accessible to multiple users with differing levels of access depending on required usage or to maintain blinding. Each site was supplied with a 4G-enabled iPad for accessing the system. The impact of this system was quantified through review of data quality and collation of feedback from site coordinators and assessors through structured process interviews.ResultsThe custom-built system was an efficient tool for collecting data and managing trial processes. Although the set-up time required was significant, using the system resulted in an overall data completion rate of 98.5% with a data query rate of 0.1%, the majority of which were resolved in under a week. Feedback from research staff indicated that the system was highly acceptable for use in a research environment. This was a reflection of the portability and accessibility of the system when using the iPad and its usefulness in aiding accurate data collection, intervention fidelity and general administration.ConclusionsA combination of commercially available hardware and a bespoke online database designed to support data collection, intervention fidelity and trial progress provides a viable option for streamlining trial processes in a multicentre complex intervention trial. There is scope to further extend the system to cater for larger trials and add further functionality such as automatic reporting facilities and participant management support.Trial registration ISRCTN65378754, registered on 13 March 2014.

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Physical Activity Interventions After Hip or Knee Joint Replacement: a Systematic Review

Ishaku

Min

Hall

2020

Curr Phys Med Rehabil Rep

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Background Studies show that following lower-limb joint replacement surgery most patients fail to achieve the recommended amount of physical activity. This study aims to describe and evaluate physical activity interventions in individuals that have undergone hip or knee joint replacement due to osteoarthritis. Design A systematic review. Protocol registration PROSPERO CRD42016033498 (http://www.crd.york.ac.uk/PROSPERO/). Experimental and observational study designs investigating physical activity interventions after joint replacement were considered. The primary outcome was self-reported or objectively measured change in physical activity. Two reviewers extracted the data and appraised the methodological quality of the included studies. Results 11873 studies were screened. Seven studies with 627 participants, aged 50 to 85 years met the review criteria. Five randomised control trial, one longitudinal quasi-experimental study with a control group and one pre/post-test study with control group. Interventions included health coaching, a walking programme, a behavioural change intervention and an alpine skiing intervention delivered between 6 and 24 weeks.Two studies reported change in physical activity using patient activity diaries and five used objective accelerometer data. Statistical pooling of the study results was not possible. However, all studies showed an increase in time spent being physically active in the intervention groups. One study also reported an increase in vitality.Conclusions Few studies have investigated physical activity interventions after hip or knee joint replacement, and evidence for the effectiveness of physical activity interventions post-replacement is low. High quality studies are needed in this area to explore the potential benefits presented within this review.

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Development and Delivery of a Physical Activity Intervention for People With Huntington Disease

Abstract: Supplemental Digital Content is Available in the Text.

Cited by 25 publications

References 31 publications

What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia

What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia

Integrating technology into complex intervention trial processes: a case study

Physical Activity Interventions After Hip or Knee Joint Replacement: a Systematic Review

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