Multidisciplinary Therapy Coaching Program For Individuals With Huntington's Disease

INTERVENTION: This is a single‐blind (assessor blinded to group allocation), two arm (multidisciplinary therapy coaching program versus lifestyle guidance), randomised controlled trial. This trial will examine the feasibility, safety and therapeutic effects of a multidisciplinary therapy coaching program, compared to lifestyle guidance, for individuals with premanifest and manifest Huntington's disease. Participants will be randomly assigned to receive the multidisciplinary therapy coaching program or lifestyle guidance by an independent statistician. Participants in both groups will receive 12 months of treatment (multidisciplinary therapy coaching program/lifestyle guidance). Multidisciplinary Therapy Coaching Program The multidisciplinary therapy coaching intervention will be designed by an interdisciplinary team of specialists comprising exercise physiologists, neuroscientists, occupational therapists and physiotherapists. The intervention will encompass cardiorespiratory and resistance exercise training, cognitive training and sleep hygiene two exercise training sessions per week and two computerised cognitive training sessions per week at home. Participants will also be asked to maintain good sleep hygiene throughout the study as indicated by the sleep resources provided. To maximise participant adherence and clinical benefits the multidisciplinary therapy coaching program will be structured into distinct cycles comprising of active, tapering and rest weeks. Six cycles, each eight weeks in duration, will be delivered during the intervention period. The intervention will be delivered by trained multidisciplinary therapy coaches (exercise physiologists). Participants will be contacted by a coach on two separate occasions, at the beginning and midway point (4 w CONDITION: Huntington's Disease; ; Huntington's Disease Neurological ‐ Neurodegenerative diseases SECONDARY OUTCOME: Attention, visual scanning and cognitive flexibility ; ; Attention, visual scanning and cognitive flexibility will be examined with the Trail Making Test. This is a composite outcome.[Attention, visual scanning and cognitive flexibility will be examined with the Trial Making Test at baseline (0 months), after 6 months and after 12 months. ] Cognitive flexibility ; ; The colour word interference test will be used to evaluate cognitive flexibility. [Cognitive flexibility will be examined with the colour word interference test at baseline (0 months), after 6 months and after 12 months. ] Cognitive Reserve ; ; Cognitive reserve will be evaluated with the Cognitive Reserve Index.[Cognitive reserve will be evaluated at baseline (0 months), after 16 weeks, after 6 months and after 12 months. ] Economic viability ; ; The economic viability will be evaluated using economically relevant data, including health adjusted life years, medical fees and medication costs and the Work Productivity and Activity Impairment‐Specific Health Problem Questionnaire (WPAI‐SHP). ; ; This will form a composite score. [Economic viability will be evaluated at baseline (0 months), after 6 months and after 12 months. ] Education and Occupation History/Complexity ; ; Education and occupational history/complexity will be evaluated using a customized demographic questionnaire. ; ; This is a composite outcome/Questionnaire.[Education and occupation history/complexity will be evaluated at baseline (0 months), after 6 months and after 12 months. ] Emotional Experience ; ; ; ; Mood state will be assessed using the Problem Behaviours Assessment. [Mood state will be evaluated at baseline (0 months), after 16 weeks, after 6 months and after 12 months. ] Motor Control ; ; ; ; ; [Primary outcome: Participant exercise tolerance will be measured using rating of perceived exertion (RPE; Borg Scale, 0‐10) after each exercise session. ] Processing speed PRIMARY OUTCOME: Barriers and motivators to engagement in telehealth‐delivered multidisciplinary rehabilitation coaching and lifestyle guidance programs, as well as digital health literacy.; ; Barriers and motivators as well as digital health literacy will be examined via a semi‐structured interview and validated questionnaires, including the Mobile Device Proficiency Questionnaire, Wireless Network Proficiency Questionnaire, Computer Proficiency Questionnaire and e‐Health Literacy Scale/Questionnaire. [The semi‐structured interview and digital health literacy questionnaires will be administered before the delivery of study treatments.] Feasibility of multidisciplinary therapy coaching and lifestyle guidance for individuals with Huntington's disease. ; ; Feasibility will be measured by evaluating the recruitment and retention of Huntington's disease participants during the trial, as well as the adherence of Huntington's disease participants to multidisciplinary therapy coaching and lifestyle guidance. The recruitment (number of participants recruited) and retention (number of participants dropouts) of Huntington's disease participants during the trial will be recorded by the chief principle investigator. Adherence to multidisciplinary therapy coaching and lifestyle guidance throughout the trial will be recorded via passive (heart rate data) and an intervention diary.[The feasibility of multidisciplinary therapy coaching and lifestyle guidance will be measured throughout the entirety of the trial. Additionally, an interim assessment time point will be included at 16‐weeks to assess the feasibility of the trial and the effects of the interventions on mood, sleep health, lifestyle and quality of life outcomes. This interim assessment time point is vital for assessing the overall fidelity of the trial. ] Safety throughout multidisciplinary therapy coaching and lifestyle guidance for Huntington's disease participants; ; The safety of multidisciplinary therapy coaching and lifestyle guidance will be examined by evaluating adverse events, including musculoskeletal injury, cardiovascular events, falls, excessive mental and physical fatigue. Adverse events reported by participants will be recorded by research staff. ; ; [The safety throughout the multidisciplinary therapy coaching and lifestyle guidance (adverse events and exercise tolerance) will be reported for each training session by participants using an online intervention diary. ] ; Emotional experience will be evaluated with the Brief Emotional Experience Scale.[Emotional experience will be evaluated at baseline (0 months), after 16 weeks, after 6 months and after 12 months. ] Language ; The controlled oral word association test will be used to evaluate language.[Language will be examined with the Controlled Oral Word Association Test at baseline (0 months), after 6 months and after 12 months. ] Mood state ; Motor control will be evaluated using the Unified Huntington's Disease Rating Scale‐Total Motor Score (UHDRS‐TMS).[Motor control will be evaluated at baseline (0 months), after 6 months and after 12 months. ] Physical activity ; Physical activity will be evaluated using the Community Healthy Activities Model Program for Seniors (CHAMPS). [Physical activity will be evaluated at baseline (0 months), after 16 weeks, after 6 months and after 12 months. ] Premorbid Intelligence ; ; ; ; Quality of life will be evaluated using the HDQLIFE.[Quality of life will be evaluated at baseline (0 months), after 16 weeks, after 6 months and after 12 months. ] Service utilisation ; ; ; Sleep health will be evaluated using the Sleep Health Index.[Sleep health will be evaluated at baseline (0 months), after 16 weeks, after 6 months and after 12 months. ] Social network ; ; The National Adult Reading Test will be used to examine premorbid intelligence.[Premorbid Intelligence will be evaluated at baseline (0 months), after 6 months and after 12 months. ] Primary outcome: Tolerance to exercise for multidisciplinary therapy coaching and lifestyle guidance for Huntington's disease participants. ; Processing speed will be examined using the Symbol Digit Modalities Test[Processing speed will be examined with the Symbol Digit Modalities Test at baseline (0 months), after 6 months and after 12 months. ] Quality of life ; Service utilisation will be determined using the Client Services Receipt Inventory.[Service utilisation will be evaluated at baseline (0 months), after 6 months and after 12 months. ] Sleep Health ; Social network will be evaluated using the PERSNET.[Social network will be evaluated at baseline (0 months), after 16 weeks, after 6 months and after 12 months. ] Socioeconomic status ; ; Socioeconomic status will be measured using a customized demographics questionnaire.[Socioeconomic status will be evaluated at baseline (0 months), after 6 months and after 12 months. ] Verbal learning and memory ; ; Verbal learning and memory will be evaluated using the Hopkins Verbal Learning Test‐Revised. This is a composite outcome.[Verbal learning and memory will be examined with the Hopkins Verbal Learning Test‐Revised at baseline (0 months), after 6 months and after 12 months. ] INCLUSION CRITERIA: Forty‐two individuals with premanifest HD (CAG > 39, DBS > 250, UHDRS‐TMS < 5) and 42 individuals with early manifest HD (CAG > 39, UHDRS‐TMS > 5, TFC > 7) will be recruited for this trial (effect size: f = .25, a = .05 and power (1‐ ß) = 80%). Participants will be required to provide written and informed consent prior to undertaking any study procedures.