Rousseau MC., Mathieu S., Brisse C., Motawaj M., Grimont E., Auquier P., Billette de Villemeur T.
Brain Inj. 2015;29(7-8):837-42. doi: 10.3109/02699052.2015.1004757. Epub 2015 May 7. PMID: 25950262.
Mediation/Education :
This study was carried out in two follow-up care and rehabilitation centers specializing in polyhandicap, on a population of patients with severe polyhandicap, defined as severe intellectual and motor impairment. This is a retrospective study whose parameters were collected from the medical records of 133 patients followed at these two centers and who died between 2006 and 2012.
The aim of the study was to gain a better understanding of the causes of death in these patients, by providing information on the etiology of polyhandicap, comorbidities, length of hospital stay, causes and place of death.
Out of a population of 712 patients with severe polyhandicap cared for in two specialized follow-up care and rehabilitation centers between 2006 and 2012, 133 (19%) patients died during this period.
There was an even split between children and adults.
The majority were men (63.2%).
The average length of stay in these institutions was 10 years 4 months.
The average age of death was 21, and in 60% of cases, the place of death was a specialized rehabilitation center (often at the request of families), followed by the emergency room (31%), home (6%) or a medical-social facility (3%).
The causes of death were, in descending order:
- Lung infections (63.2%)
- Sudden death (18%)
- Status epilepticus (6.8%)
With regard to comorbidities, the most frequent in descending order were chronic respiratory insufficiency, digestive pathologies, drug-resistant epilepsy and severe scoliosis.
The main etiologies of polyhandicap were: perinatal encephalopathies (31.6%), metabolic encephalopathies (18%) and epileptic encephalopathies (11.3%).
Respiratory disorders are both the main comorbidity and the main cause of death in patients with severe polyhandicap, and are favored by digestive disorders (GERD, false routes), thoracic deformities and seasonal viruses. Prevention (vaccinations, respiratory physiotherapy, etc.), adapted nursing care and medical care aim to stabilize health and avoid further handicaps.
