An exploration of the physical activity life cycle in Huntington’s disease

This study aimed to explore how living with Huntington’s disease (HD) impacts on the experience of physical activity (PA) across the stages of the disease. The research questions were: 1) What are the experiences of PA participation across the stages of HD? 2) How do the nuances of living with a neurodegenerative disease such as HD affect engagement in PA? The focus group (FG) method was used to explore the breadth of experiences of PA in the context of HD. Participants of eight FGs across the UK included people across the spectrum of HD with varying degrees of symptom manifestation, caregivers (family members/formal caregivers), and healthcare professionals. Framework analysis method (Ritchie and Spencer 1994) was used for data analyses. The process involved five stages: familiarisation, coding, indexing, charting and mapping, and interpretation of data to develop key themes. A key part of the process was development of an analytical coding framework to use in the indexing (of the data) stage. The data itself and a theoretical model (self-regulation model) were both used to develop the framework. The literature review identified a lack of theoretically underpinned qualitative research in PA and HD, therefore the self-regulation model (SRM) (Levanthal et al. 1984) was selected to explore PA in HD. Components of the SRM were used to develop a priori ‘index codes’ of the framework. Open coding of transcripts was also used to develop ‘index codes’ of the framework. The findings highlighted that over the life-span of the disease the needs and abilities of people with HD change, and this has implications such as coping responses and strategies for how PA is experienced and sustained in HD. Social context and environment are key aspects that require consideration for PA in HD, and this has implications such as consideration of familial or caregiver support and general public awareness of HD for development of management and research interventions. The SRM facilitated understanding of participant experiences, however, it appeared that self-regulation of activities becomes more collaborative with the caregiver as HD progresses. As such, a modified version of the SRM that incorporates the increasingly collaborative regulation of PA has been suggested and is presented for understanding PA in HD

Promoting physical activity in Huntington's Disease: co-design of a care partner resource

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

Motor-cognitive dual-task deficits in individuals with early-mid stage Huntington's disease

Background. Huntington’s 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 Huntington’s disease 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 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 development of PAT‐HD: a co‐designed tool to promote physical activity in people with Huntington’s disease

Background Huntington's disease (HD) is a genetic condition resulting in movement, behavioural and cognitive impairments. People with HD have low levels of physical activity which may be compounded by insufficient support from health‐care professionals. Objective To evaluate the initial acceptability of a co‐designed tool used within a HD clinic to promote physical activity. Design Co‐design of a physical activity tool; acceptability evaluation. Setting and participants Co‐design included people with HD and health‐care professionals. Acceptability was evaluated in a HD clinic in the UK. Main variables studied A physical activity tool was co‐designed and used within a HD clinic. Main outcome measure Acceptability as assessed by semi‐structured interviews with members of the HD clinic. Results Forty people visited the HD clinic; 19 were given physical activity advice. Themes around who, where and how promotion of physical activity could take place were identified; concepts of benefits and barriers were threads through each theme. Discussion We describe for the first time the co‐design of a HD specific physical activity tool. Our associated acceptability study emphasizes the importance of individualized planning of physical activities in complex neurodegenerative conditions. Perceived barriers were time and lack of knowledge of local resources. Conclusions A simple tool can support conversations about physical activity with people with HD and is an aid to individualized goal setting. Exploring the use of PAT‐HD within a community setting and development of support systems for health‐care professionals and support workers who are in regular contact with people with HD is required

An exploration of physical activity experiences throughout the Huntington's disease journey: supporting development of theoretically underpinned complex interventions

Purpose: Huntington’s disease is an autosomal dominant neurodegenerative disease. Progressive physical, behavioural and cognitive impairments cause loss of independent function. Physical activity interventions are important components of comprehensive intervention strategies and may help alter the functional decline trajectory. Qualitative research has an important role to play in developing theoretically sound, well-defined physical activity interventions in Huntington’s disease. Materials and methods: Eight focus groups were conducted with people with prodromal to late stage Huntington’s disease, caregivers (family members/formal), and healthcare professionals. An analytical coding framework was developed from the data and Levanthal’s self-regulation model to assist analysis. Results and conclusions: Key themes were identified: evolving representations of Huntington’s disease and physical activity; varying social environment of the person with Huntington’s disease and the impact on physical activity; achieving physical activity participation while coping with the nuances of Huntington’s disease. Levanthal’s model facilitated understanding of physical activity experiences, however with progression, self-regulation of activities needs to become more collaborative with caregivers. A modified self-regulation model specific to physical activity in Huntington’s disease is presented. Using a novel approach to generate new understanding of physical activity across the Huntington’s disease lifespan facilitated development of an original and significant theoretical foundation to underpin development of a range of much needed physical activity and exercise interventions in Huntington’s disease. •Implications for rehabilitation •Social and familial context of individuals with HD is a key consideration for health care professionals supporting physical activity participation. •Strategies such as using physical activity as a way of achieving control and adjusting expectations can help people with HD to continue to be active. •People with HD adapt physical activity from high level to more functional activities with symptom progression

Exploration of a co-production approach to developing a walking group with people with Huntington's Disease

Background: People with Huntington’s disease (HD) struggle to maintain regular physical activity despite evidence of the benefits of exercise. This study aimed to evaluate the experiences of people who co-produced a walking group for people with HD. Methods: Three people with HD, a specialist HD advisor (sHDA), two project officers from Let’s Walk Cymru (LWC) and the research team co-produced and participated in a walking group for people with HD. A walking group for people with HD was supported weekly by LWC for eight weeks and fortnightly for a further 12 weeks. Semi-structured interviews were undertaken with three people with HD, a sHDA and two project LWC project officers. Interviews were transcribed verbatim and analysed using thematic analysis. Findings: Interviews identified six themes across participants: “organisation and planning”; “purpose of the walks”; “benefits”; “barriers”, “the group” and “the future”. People with HD enjoyed participating in the walks and reported increased confidence to be more active outside the home. All participants noted challenges including apathy, diminished planning skills, social stigma and motor problems specific to HD; people with HD perceived a lack of influence in relation to co-planning and co-execution of the walking group. Conclusions: The walking group was perceived as enjoyable, beneficial, and motivational. This is the first study to report co-production of a walking group with people with HD and the findings suggest that further research is needed to adapt models of co-production for people with a long-term complex condition

J16 Exploring the acceptability and key components for success of a 12 month physical activity intervention in early to mid-stage Huntington's disease

Background The PACE-HD trial investigated the feasibility of conducting a randomised controlled trial of a 12-month physical activity intervention delivered by physiotherapists. Aim To conduct a process evaluation of the PACE-HD intervention to specifically assess intervention components affecting acceptability and fidelity of intervention delivery. Method Intervention delivery and acceptability was assessed via an end of study questionnaire completed by participants randomised to receive the intervention as part of an evaluation framework. Questionnaires required respondents to rate items relating to various intervention components on a scale from 1 [strongly disagree] to 5 [strongly agree] and additional open text questions. Scores of 4 and above were rated as positive. Results Twenty participants completed the questionnaire. Responses regarding the support of therapists were largely positive (99%) with full enjoyment of and satisfaction with coach-led sessions (100%), plus high enjoyment of self-supported sessions (85%). Only some (65%) participants reported that the provided workbook aided goal setting and its use was not frequent. Most (80%) participants used the Fitbit to monitor their physical activity despite only 55% agreeing that it was easy to use and 65% that its use was motivational. Participants indicated increased confidence for physical activity after 12 months; 90% of whom stated that they felt confident continuing with physical activity after the trial. Outcome The PACE-HD intervention was acceptable to HD participants and they felt supported by the intervention therapists. Knowledge gathered in this process evaluation can inform successful implementation, potential causal mechanisms and contextual factors that may affect intervention outcome