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Teachers College, Columbia University
Physical therapy and exercise interventions in Huntington's disease: a mixed methods systematic review protocol , 15(7), 0
Review question/objective: The review seeks to evaluate the effectiveness of physical therapy and exercise interventions in Huntington’s disease (HD). The review question is: What is the effectiveness of physiotherapy and therapeutic exercise interventions in people with HD, and what are patients’, families’ and caregivers’ perceptions of these interventions?
The specific objectives are:
To determine the effectiveness of physiotherapy and therapeutic exercise interventions in people with HDon physical and cognitive function.
- To explore the perceptions of people with HD and their families and caregivers with regard to their experienceof physiotherapy and exercise interventions.
This mixed methods review seeks to develop an aggregated synthesis of quantitative, qualitative and narrative systematic reviews on physiotherapy and exercise interventions in HD, in an attempt to derive conclusions and recommendations useful for clinical practice and policy decision-making.
Exploration of Two Training Paradigms Using Forced Induced Weight Shifting With the Tethered Pelvic Assist Device to Reduce Asymmetry in Individuals After Stroke: Case Reports, , 2017
Many robotic devices in rehabilitation incorporate an assist-as-needed haptic guidance paradigm to promote training. This error reduction model, while beneficial for skill acquisition, could be detrimental for long-term retention. Error augmentation (EA) models have been explored as alternatives. A robotic Tethered Pelvic Assist Device has been developed to study force application to the pelvis on gait and was used here to induce weight shift onto the paretic (error reduction) or nonparetic (error augmentation) limb during treadmill training. The purpose of these case reports is to examine effects of training with these two paradigms to reduce load force asymmetry during gait in two individuals after stroke (>6 mos). Participants presented with baseline gait asymmetry, although independent community ambulators. Participants underwent 1-hr trainings for 3 days using either the error reduction or error augmentation model. Outcomes included the Borg rating of perceived exertion scale for treatment tolerance and measures of force and stance symmetry. Both participants tolerated training. Force symmetry (measured on treadmill) improved from pretraining to posttraining (36.58% and 14.64% gains), however, with limited transfer to overground gait measures (stance symmetry gains of 9.74% and 16.21%). Training with the Tethered Pelvic Assist Device device proved feasible to improve force symmetry on the treadmill irrespective of training model. Future work should consider methods to increase transfer to overground gait.
A pilot study of a minimally supervised home exercise and walking program for people with Parkinson’s disease in Jordan, , 2017
Aim: This study aimed to evaluate the feasibility and cultural considerations of a minimally supervised, home-based exercise program in Jordan.
Methods: Quantitative and qualitative approaches were used. Thirty participants were randomly allocated to either an 8-week intervention group (n = 16), or a standard care group (n = 14). The intervention incorporated the home use of an exercise DVD, walking program and initial instructional sessions and weekly phone calls provided by a physiotherapist. Interviews were used to explore feasibility. Uni ed Parkinson’s disease rating scale (UPDRS-III); balance and walking speed were assessed.
Results: The retention rate was 86.7% and mean adherence rate was 77%. Personal and sociocultural barriers of adherence to the exercise program were identi ed. UPDRS-III at follow-up was lower in the intervention group.
Conclusion: A home exercise program was feasible. Sociocultural barriers speci c to Arabic culture may a ect the uptake of such an intervention in Parkinson’s disease in these countries.
Motor Cognitive Dual Task Deficits In Individuals With Early Mid Stage Huntington Disease, 49, 2016
Background: Huntington disease (HD) results in a range of cognitive and motor impairments that progress throughout the disease stages; however, little research has evaluated specific dual-task abilities in this population, and the degree to which they may be related to functional ability.
Objectives: The purpose of this study was to a) examine simple and complex motor-cognitive dual-task performance in individuals with HD, b) determine relationships between dual-task walking ability and disease-specific measures of motor, cognitive and functional ability, and c) examine the relationship of dual-task measures to falls in individuals with HD.
Methods: Thirty-two individuals with HD were evaluated for simple and complex dual-task ability using the Walking While Talking Test. Demographics and disease-specific measures of motor, cognitive and functional ability were also obtained.
Results: Individuals with HD had impairments in simple and complex dual-task ability. Simple dual-task walking was correlated to disease-specific motor scores as well as cognitive performance, but complex dual-task walking was correlated with total functional capacity, as well as a range of cognitive measures. Number of prospective falls was moderately-strongly correlated to dual-task measures.
Conclusions: Our results suggest that individuals with HD have impairments in cognitive-motor dual-task ability that are related to disease progression and specifically functional ability. Dual-task measures appear to evaluate a unique construct in individuals with early to mid-stage HD, and may have value in improving the prediction of falls risk in this population.
The Societal Cost of Huntington's Disease: Are We Underestimating The Burden? , 23(10), 2016
Background and purpose: Approximately 9000 people in the UK are affected by Huntington's disease (HD). People with HD require ongoing health and social care support. There is a knowledge gap about costs of health and social care use associated with HD in the UK. This paper estimates the economic cost in the UK.
Methods: Data on UK patients for the year 2013 were extracted from the European Huntington's Disease Network REGISTRY study, a full clinical dataset, including the full medical history and medication history for patients with HD. National unit costs for the price year 2013 were applied to health and social care services.
Results: Data were available for 131 people. The mean annual cost per person with HD was £21 605. The largest proportion of this cost (65%) was due to informal care (£14 085).
Conclusions: Informal care was the largest driver of costs across all stages of HD; thus there is a need to also consider the needs of carers when planning services for people with HD.
Development and delivery of a physical activity intervention for people with Huntington disease: Facilitating translation to clinical practice, 40, 2016
Background/Purpose: The development and delivery of a 14-week complex physical activity intervention for people with Huntington's Disease (HD) where detailed information about the intervention was embedded in the trial design process.
Methods: The intervention was developed through a series of focus groups whose findings informed the development of a logic model that was broadly consistent with the framework of self-determination theory. Key components underpinning the delivery of the intervention were implemented including a defined coach training program and intervention fidelity assessment methods. Training of coaches was delivered via group and 1:1 training sessions using a detailed coach's manual, and with ongoing support via video calls, and e-mail communication as needed. Detailed documentation was provided to determine costs of intervention development and coach training.
Results: Intervention delivery coaches at 8 sites across the United Kingdom participated in the face-to-face training. Self-report checklists completed by each of the coaches indicated that all components of the intervention were delivered in accordance with the protocol. Mean (standard deviation) intervention fidelity scores (n = 15), as measured using a purpose-developed rating scale, was 11 (2.4) (out of 16 possible points). Coaches' perceptions of intervention fidelity were similarly high. The total cost of developing the intervention and providing training was £30,773 ($47,042 USD).
Discussion/Conclusions: An important consideration in promoting translation of clinical research into practice is the ability to convey the detailed components of how the intervention was delivered to facilitate replication if the results are favorable. This report presents an illustrative example of a physical activity intervention, including the development and the training required to deliver it. This approach has the potential to facilitate reproducibility, evidence synthesis, and implementation in clinical practice.
A randomized, controlled trial of a multi-modal exercise intervention in Huntington’s disease, 31, 2016
Introduction: This study aimed to evaluate the feasibility and benefit of a structured exercise intervention in people with Huntington’s Disease (HD).
Methods: This study was conducted at 6 sites, and participants were randomized into either exercise or control (usual care) groups, and were assessed at baseline, 13 and 26 weeks. The intervention was a 12 week, three times per week progressive exercise program, including aerobic (stationary cycling) and upper and lower body strengthening exercise with tapered 1:1 support for 20 of 36 sessions.
Results: 314 adults were assessed for eligibility: 248 did not meet inclusion criteria, 34 declined, and 32 were recruited and randomized. Three individuals in the intervention group were withdrawn within the first month due to concomitant medical conditions, resulting in 14 participants in intervention and 15 in control groups. There were two AEs in the intervention group, both related to previous medical condi- tions, and there were two SAEs, both in the control group. The intervention group had better fitness (predicted VO2 max difference: 492.3 ml min 1, 95% CI: [97.1, 887.6]), lower UHDRS mMS (difference 2.9 points, 95% [ 5.42, 0.32]) and lower weight at Week 13 (difference 2.25 kg, 95% CI: [ 4.47, 0.03]).
Conclusion: This study demonstrates that a short-term exercise intervention is safe and feasible. In- dividuals with HD may benefit from structured exercise, and intensity, monitoring and support may be key factors in optimizing response. Larger scale trials are now required to fully elucidate the extended clinical potential of exercise in HD.
Integrating technology into complex intervention trial processes: a case study, 17(1), 2016
Background: Complex intervention trials are associated with high costs and burdens across multiple sites. Traditional data collection methods can be time-consuming with error rates high. Electronic source data collection can address many of these inefficiencies, but has not routinely been used in complex intervention trials. We present the use of an online system for managing all aspects of data handling and for monitoring of trial processes in a multicentre trial of a complex intervention. We 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 allowed multiple users with differing access levels based 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 through structured process interviews.
Results: The system was an efficient tool for collecting data and managing trial processes. Although the setup 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 staff indicated that the system was acceptable for use in a research environment. This was a reflection of the portability and accessibility of the system and its usefulness in aiding accurate data collection, intervention fidelity and general administration.
Conclusions: A combination of commercially available hardware and a bespoke online database 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.
Supporting physical activity engagement in people with Huntington’s disease (ENGAGE-HD): study protocol for a randomized controlled feasibility trial, 15, 2014
Huntington’s disease (HD) is neurodegenerative condition resulting in symptoms that occur across a wide range of neurological domains. The benefits of regular physical activity for people with HD are widely recognized. However, a number of factors can prohibit sustained exercise and activity. The purpose is to explore the feasibility, acceptability and effectiveness of a physical activity intervention program targeted for people with early to midstage HD.
The proposed trial is a single blind, multisite, exploratory, randomized controlled feasibility trial of a physical activity intervention. 62 participants with genetically confirmed HD will be recruited. Each participant will be involved for 26 weeks. Participants will be randomized immediately following the baseline assessment into either a physical activity intervention or a social contact control intervention. The physical activity intervention is framed around self-determination theory placed within a broader behaviour change wheel framework. An HD-specific workbook and individual goal setting will be utilized over six 1:1 sessions, with interim telephone calls. All participants will be reassessed at 16 weeks following the baseline assessment, and then again at a final follow-up assessment 26 weeks later. After the study, all participants will be offered a brief version of the alternative intervention, with one home visit and one follow-up telephone call.
The physical activity intervention and the comparator social interaction intervention have been developed following consultation with people with HD and their families. Each are individually tailored and determined on individual needs and goals. The results from this trial will provide guidance for the development of definitive trials.