Adapted Physical Activity Effect on Abilities and Quality of Life of Huntington Patients and Relatives During Rehab Stay

Assistance Publique - Hôpitaux de Paris32 enrolled

Overview

Intro: Huntington's disease is a neurodegenerative disease that affects the brain, inducing a dysfunction and death of the middle spiny striatal projection neurons and a progressive alteration of cognitive and motor functions, and psycho-behavioral problems. There is currently no curative treatment but we know hat a multidisciplinary care can optimize the functioning and the quality of life of the patients with Huntington's disease. A meta-analysis of 18studies indicates that exercise and physical activity can improve motor function, gait speed and balance, and would also improve self-confidence, independence, well-being, reduced apathy and better socialization with family and friends. Hypothesis/Objective The hypothesis is that the inclusion of a 4 week-program with Adapted Physical Activity (APA) during a rehabilitation stay will improve some motor, cognitive and psycho-behavioral abilities, compared to the control group. Method The patients will be randomized into two groups : The control group will have the "classic" program performed in the standard of care with: kinesitherapy, soft gym, medico-social workshop, cognitive workshop, creative workshop, individual care (rehabilitation, rest, and creation). The experimental APA group will have in addition of the classic program, 6 APA workshops per week with collective support : Adapted Physical workshops, adapted cycling, therapeutic (horseback/equestrian) riding, cultural or leisure outings, situation tests For the two groups, at the start of the 4 weeks of rehabilitation program an initial visit will be performed with, as part of this research, a clinical examination, a neurological examination, a dietary consultation, as well as a biological assessment as part of habitual care. The clinical examination, the neurological examination and the dietary consultation will be performed each week, during the 4 weeks of the program, At the end of the study, one month after the rehabilitation of the patient, a visit by phone-call will be performed for the patient and his caregiver.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

Inclusion Criteria for the Patient : * Mid-stage Huntington's disease but with the ability for an autonomous walking for 10 meter * Age ≥ 18 years old * Stable medication for at least 4 weeks before the start of the study and a stable diet during the duration of the program. A stable diet means no weight loss up to 2kg in the last month prior to inclusion * Patient who received a complete information and who signed an informed consent for the research (or his/her caregiver if incapacity to sign). Tutor/Guardian who received a complete information and who signed an informed consent for the research if applicable * Affiliated to a social security scheme Inclusion Criteria for the Caregiver : * Person participating in the daily life of the patient * The patient is included in the research * Age ≥ 18 years old * Having received a complete information * Non opposition collected by the investigator Exclusion Criteria: * Having a physical or psychiatric condition preventing the completion of the program and assessments. * Having a history of additional major neurological disorders such as a stroke or an orthopedic condition limiting mobility * Any difficulty to understand or read French which could possibly invalidate the relevance of the application of questionnaires according to the opinion of the investigator * Addictions, alcohol dependence * Any other neurological, musculoskeletal or cardiovascular disease which could lead to errors in the assessment * Participation to another interventional research or being in the exclusion period following a previous research if applicable * Patient under AME (except if exemption from affiliation) Exclusion criteria for the Caregiver : * Having a physical or psychiatric condition preventing the completion of the program and assessments. * Any difficulty to understand or read French which could possibly invalidate the relevance of the application of questionnaires according to the opinion of the investigator * Under tutelage or guardianship

Outcomes

Primary Outcomes

Motor function score of Unified Huntington's Disease Rating Scale (UHDRS)

UHDRS:Unified Huntington's Disease Rating Scale , minimum value: 0 maximum value: 124 higher score means a worse outcome Success will be defined by an improvement of the motor function score

Time frame: Change from Baseline at 1 month

Secondary Outcomes

cognitive function score of Unified Huntington's Disease Rating Scale (UHDRS) using Stroop test

UHDRS:Unified Huntington's Disease Rating Scale , minimal number of correct answers:0 maximal number of correct answers:100 higher score means a better outcome Success will be defined by an improvement of the cognitive function score

Time frame: Change from Baseline at 1 month

psycho-behavioral function score of Unified Huntington's Disease Rating Scale (UHDRS)

UHDRS:Unified Huntington's Disease Rating Scale , minimum value:0 maximal value:88 higher score means a worse outcome Success will be defined by an improvement of the behavioral function score

Time frame: Change from Baseline at 1 month

Adapted Physical Activity Effect on Abilities and Quality of Life of Huntington Patients and Relatives During Rehab Stay

Overview

Conditions

Interventions

Eligibility

Locations (1)

Outcomes

Primary Outcomes

Secondary Outcomes