Characteristics of Polyhandicapped Patients. About a 875 Patients Cohort

Objectives: Polyhandicap (PLH) is a complex disability condition corresponding to a chronic affliction occurring in an immature brain, leading to a combination of a profound mental retardation and a serious motor deficit, resulting in an extreme restriction of autonomy and communication. These patients are completely dependent on human and technical assistance. To improve the knowledge concerning this population of patients we implemented a cohort study, the aim of this cohort was to describe the characteristics of patients with severe PLH.

Methods: Patients were included from four specialized re-education centers, one residential facility and home, PLH defined by the combination of motor deficiency, profound mental retardation, intelligence quotient < 40, functional independency measure (< 55), gross motor function scale III–V, and age at onset of cerebral lesion below 3 years. Data collection : socio demographic data, etiology, biological, and clinical data, associated handicaps (epilepsy, sensorial deficiency, chronical pain, swallowing disorders, behavior disorders, medical devices …), developmental state (posture, language, sociability, and communication), main vital functions (orthopedic, digestive, urinary, respiratory, and neurology).

Results: A total of 875 PLH patients were included in the cohort. Mean ages 24.6/−16.8 years (range, 3–68 years), 45.8% children, 54.2% adults, 53.3% male, 46.7% female, etiology of PLH was unknown in 15.2% of cases,76% were congenital, and 24% were acquired. Comorbidities of PLH patients: 26.3% hip luxation, 57.2% scoliosis, 15% had arthrodesis, 70.5% limb deformations, 35.8% had swallowing disorders, 31.6% had a gastrostomy, 40.5% gastro esophageal reflux, 55% epilepsy, and 26.% presented previous status epilepticus, 10.5% presented one or more than a seizure/day, 28.6% visual impairment, 5% hearing impairment, 72.2% behavior disorders, 91% were incontinent, 92% do not have any articulated language, and 20.5% had chronicle bronchial congestion. General developmental level according of the four domains of Brunet–Lézine scale were for posture domain: 5.5/−4.5 months, coordination domain 5/−4.4 months, for language domain 5.5/−5.1 months, and for socialization domain 6/−5.4 months.

Conclusion: Polyhandicap is a dramatic condition consequence of various etiologies mostly of congenital origin, most of these patients present associated handicaps and severe comorbidities mostly orthopaedic, digestive, and respiratory, their mean developmental level is below 7 months. This is to our knowledge, the first important survey describing clinical characteristics of severe polyhandicapped patients.