AIM:This study concerns the aetiologies, comorbidities and places and causes of death of a population of persons with severe polyhandicap (PLH).METHODS:Based on the medical files of all deceased PLH patients, who were cared for between 2006-2012. Data collected were aetiological diagnosis of the polyhandicap, duration and type of hospitalization, age, place and cause of death, comorbidities: chronic respiratory insufficiency, recurrent attacks of pulmonary infections, urinary infections, active epilepsy, scoliosis, chronic digestive disorders and behavioural problems.RESULTS:One hundred and thirty-three patients died, 70 children and 63 adults. The sex ratio was 84 men to 49 women. The average stay in these institutions was 10 years 4 months. The average age at the time of death was 21 years, in 60% of cases the place of death was in the specialist rehabilitation centres. The causes of death in decreasing order were: pulmonary infections (63.2%), sudden death (18%) and status epilepticus (6.8%); 79.7% of patients suffered from chronic respiratory insufficiency, 60.2% suffered serious scoliosis, 66.9% drug-resistant epilepsy and 78.9% had digestive disorders. The main aetiologies of the polyhandicap were: pre- and perinatal encephalopathies (31.6%), metabolic encephalopathies (18%) and convulsive encephalopathies (11.3%).CONCLUSION:The main comorbidity and main cause of death in patients with severe PLH is respiratory failure.
AIMS:To describe the rehabilitation of non-ambulatory children with cerebral palsy and to explore adjustability on their individual needs.MATERIAL AND METHOD:Data described are extracted from an on-going national cohort study, following during 10years 385 children with cerebral palsy, aged from 4 to 10, Gross Motor Function Classification System IV and V. We analysed data from the first 190 patients (mean age 6years 10months (SD 2.0), 111 boys), focusing on physiotherapy, ergotherapy, psychomotility and speech therapy in medico-social and liberal sectors.RESULTS:In medico-social sector, duration of paramedical care is significantly more important than in liberal sector (structure of care: median=4.25h/week, liberal sector: median=2.00h/week) (P<0.0001). More than 4 different types of care per week are given in medico-social sector, while in liberal sector children benefit from only 2 different types of care a week. In investigators opinion, rehabilitation in structures of care is 71.65% adapted as opposed to 18.75% in the liberal sector (P<0.001). Children level V have less time of rehabilitation than the others (P=0.0424).INTERPRETATION:Rehabilitation of children with cerebral palsy who are not able to walk, with an objective to improve quality of life, is truly multidisciplinary and suitable in medico-social sector.