Profound multiple disabilities also called in French polyhandicap are defined by the combination of a deep mental disability and severe motor deficit with extreme restriction of autonomy. Life in institution for people with profound multiple disabilities induces emotional and educative deficiency and often conducts to behavioral disorders. These behavioral disorders also impact on quality of life and feelings of caregivers. An intensive multimodal educative program proposed to patients with profound multiple disabilities can improve their psychic well-being, reduce chronic pain and improve also quality of life and feelings of caregivers. The intensive multimodal educative program will be compared to the usual practice of educative program.
People with profound multiples disabilities needs particular follow-up with education, care, communication and socialization. Our hypothesis is that an intensive multimodal educative program of 5 hours a week during 12 months compared to the usual practice of 1 hour a week conducts to the reduction of behavioral disorders and improves the quality of life and feelings of caregivers. This study is multicenter, controlled, randomized in two parallel groups and open-labelled comparing usual practice of educative program and intensive educative program during 12 months. The evolution of predominant behavioral disorder and quality of life and feelings of caregivers is evaluated at inclusion (M0), six months after (M6) and twelve months after (M12).
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
63
5 hours a week
Hôpital La Roche Guyon
La Roche-Guyon, France
To assess the efficacy at 12 months of intensive multimodalitaire educational care compared to usual educational care of patients with multiple disabilities on behavioral disorders.
The average number of predominant behavioral disorder will be evaluated by caregivers filling a form twice a day during 7 days. The predominant behavioral disorder will be identified by the caregivers after 15 days of observation among the following disorders: * Restlessness episodes * Unexplained crying * Rumination * Bruxism * Self-mutilations * Heteroagressif behavior * Gestural Stereotypies * Rythmic movements (swings) * Iterative friction
Time frame: At the inclusion and 12 months
Chronic pain. (EDSS scale)
Pain evaluation with the validated EDSS scale
Time frame: At the inclusion, 6 months and 12 months.
Evolution of frequency of behavior disorders.
The behavioral disorders will be evaluated during 7 days with a form filled out twice a day by caregivers.
Time frame: At the inclusion, 6 months and 12 months.
Consumption of psychotropic treatments.
Reduction of the number and/or dose of psychotropic treatments.
Time frame: At the inclusion and 12 months.
Evaluation of the impact of an intensive educative program for patients on chronic stress consequences on referent caregivers at the inclusion, 6 months and 12 months evaluated by the Maslach Burnout Inventory (MBI).
Time frame: At the inclusion, 6 months and 12 months
Evaluation of the impact of an intensive educative program for patients on implemented strategy to deal with stress among referent caregivers at the inclusion and 12 months. with the Brief-COPE questionnaire.
Time frame: At the inclusion and 12 months.
Evaluation of the impact of an intensive educative program for patients on emotional distress of referent caregivers evaluated at the inclusion and 12 months with the Hospital Anxiety and Depression Scale (HADS).
Time frame: At the inclusion and 12 months
Evaluation of the impact of an intensive educative program for patients on quality of life of referent caregivers evaluated at the inclusion and 12 months with the WOQOL-Bref scale.
Time frame: At the inclusion and 12 months
Evaluation of the impact an intensive educative program on the duration of behavioural problems by the average difference between the inclusion and at 12 months
Time frame: At the inclusion and 12 months
Evaluation of the impact an intensive educative program on the disorder most invasive behaviour for the patient by the frequency of disappearance between the inclusion and at 12 months and the most pervasive disorder
The most pervasive disorder is defined as the most harmful disorder for the patient and/or its management, according to the care teams responsible for each patient
Time frame: At the inclusion and 12 months
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