Aetiologies, comorbidities and causes of death in a population of 133 patients with polyhandicaps cared for at specialist rehabilitation centres

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.