Facilitating physical activity behaviour change in neurodegenerative diseases: lessons from a Huntington’s disease intervention trial.

Special Interest Report
Population: Adult

Monica Busse, PT, PhD, Professor, Cardiff Centre for Trials Research busseme@cardiff.ac.uk

Lori Quinn, PT, EdD, Senior Research Fellow, Cardiff University quinnl1@cardiff.ac.uk

Rob Trubey, PhD, Research Assistant, Cardiff University trubeyrj@cardiff.ac.uk

Nina Gobat, PhD, Wales School of Primary Care Research, Cardiff University GobatNH@cardiff.ac.uk

ENGAGE-HD Trial Management Group, Cardiff University,  ,   engage-hd@cardiff.ac.uk

Keywords: Prevention, Huntington’s Disease, Physical Activity, Implementation

Purpose: Huntington’s disease (HD) is a rare, single gene neurodegenerative disease resulting in symptoms across neurological domains, including cognitive, behavioural and motor. Participating in regular physical activity may offer a means of secondary prevention to potentially slow or alter the course of disease progression. Here we describe the development and delivery of a personalised, complex physical activity intervention for people with HD. The intervention is under evaluation in a multi-centre trial (ISRCTN 65378754).

Description: The ENGAGE-HD intervention consists of 3 main elements, namely a physical activity coach, a purpose developed Physical Activity Workbook and an optional exercise DVD (Move to Exercise). The focus of the intervention is on an individualised life-style approach to enhancing physical activity in people with HD. Interpersonal interactions of the coach are underpinned by the concepts of self-determination theory (SDT). The workbook and diary are important for goal setting, education, enablement and modelling, within the broader behaviour change theoretical framework.

Summary of Use: Participants receive six home visits and interim supportive phone calls over a course of 14 weeks. Coaches receive 1:1 training from a highly experienced lead intervention physical therapist, who also provides on-going support to coaches during the trial. Intervention fidelity is assessed with an intervention implementation checklist. At least one of the coaching sessions is audio recorded and transcribed. Transcriptions are analysed by the lead intervention therapist to a) judge the extent to which the coach’s interactions adhere to the three core elements of SDT (autonomy, competence and relatedness), and b) provide constructive feedback to coaches between sessions to promote on-going fidelity.

Importance to members:  Exercise and physical activity are secondary prevention strategies that have the potential to significantly impact the progression and management of neurodegenerative diseases such as HD. However, there are a number of disease-specific factors that make it particularly challenging to establish and sustain regular exercise, and there is scant information to guide therapists as to the optimal approach to facilitate behaviour change in this population. Our intervention was developed following wide-ranging consultation with people with HD and their families to accommodate the known limiting factors in this population. A major emphasis of the intervention is that activity plans are determined by individual needs and goals that may change with disease progression. Expert oversight and co-ordination is crucial at a trial specific level. It should therefore be acknowledged that such a hub-and spoke model will have implications for implementation in a more general population. However as the intervention is clearly informed by an evidenced based logic model, this will serve to highlight knowledge gained from this trial and facilitate effective translation into clinical practice.

Busse, Monica , PT, PhD; Quinn, Lori , PT, EdD; Trubey, Rob , PhD; Gobat, Nina , PhD; Trial Management Group, ENGAGE-HD , Cardiff University. Facilitating physical activity behaviour change in neurodegenerative diseases: lessons from a Huntington’s disease intervention trial.. Poster Presentation. IV STEP Conference, American Physical Therapy Association, Columbus, OH, July 17, 2016. Online. https://u.osu.edu/ivstep/poster/abstracts/100_busse-et-al/