BackgroundThe aims of this study were 1) to describe the health profiles and care management of polyhandicapped patients according to 2 modalities, specialized rehabilitation centers (SRC) and residential facilities (RF), and 2) to estimate the adequacy of care management of these patients.MethodsThis was an 18-month cross-sectional study including patients with a combination of severe motor deficiency and profound intellectual impairment. The patients were from 4 SRC and 9 RF. The following data were collected: sociodemographics, health status, care management, and adequacy of care management.ResultsA total of 782 patients were included: 410 (52%) were cared for in SRC and 372 (48%) in RF. Global objective adequacy (health severity and age category) was higher for patients cared for in SRC compared with patients cared for in RF (57 vs. 44%, p< = 10−3). Global subjective adequacy (self-perception of the referring physician and request of change in structure) was higher for patients cared for in SRC in comparison with patients cared for in RF (98 vs. 92%, p< = 10−3).ConclusionsThis study provides key elements of adequacy of care management modalities for polyhandicapped patients in France.Trial registrationClinicalTrials.gov NCT02400528

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Objectives Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. Design Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). settings PLH children were recruited from a specialised paediatric/neurological department. Participants The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. Outcomes measures From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psychobehavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). results Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20 to 81±12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. Conclusions Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions. trial registration number NCT02400528.bACkgrOunD Polyhandicap (PLH) is a severe health condition with complex disabilities. This chronic disorder occurs in an immature brain,

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BackgroundPolyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents’ QoL.MethodWe conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected.ResultsThe QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents’ QoL were financial issues, health status, and coping strategies. The PLH individuals’ health status was not associated with parents’ QoL.ConclusionsSome QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.