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Background: The care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption., Methods: The longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care., Results: Among the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.)., Conclusions: This study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals., Trial Registration: NCT02400528, registered 27/03/2015., (© 2024. The Author(s).)

Objectives: The concept of polyhandicap first emerged in the late '60s in France, with actually a consensus on its definition. This consensus has yet to be reached internationally. The absence of an international consensus on a definition and name for persons with polyhandicap limits progress in research and health planning for these people., Methods: This article describes the history of the emergence of the concept of polyhandicap in France and internationally., Results: The emergence of the concept and definition of polyhandicap is part of the history of the development of special education and care for children with disabilities started at the end of the 19th century and during the first half of the 20th century. In France, between 1970 and 2002, working groups composed of professionals and family associations gradually developed and refined the definition of polyhandicap, differentiating it from other clinical entities such as cerebral palsy. Internationally, the term polyhandicap is used in 4 European countries: in France where it first appeared, in Italy, in French-speaking Belgium, and in French-speaking Switzerland but also outside the EU. Various terms may be used around the world to describe clinical entities similar to polyhandicap; the most frequently used in the literature is the term Profound Intellectual and Multiple Disabilities (PIMD) or PIMD Spectrum which does not systematically refer to an early brain injury., Discussion: We are currently in the process of internationalizing the concept and definition of polyhandicap, and hopefully, as was the case for cerebral palsy in the 2000s, the various research teams working on this subject around the world will create collaborations and research networks targeting this specific population., Conclusion: A consensus around a precise definition of polyhandicap is important to ensure that these people are recognized for their uniqueness and specific qualities and to provide them adapted care., Competing Interests: Declaration of competing interest The authors report there are no competing interests to declare., (Copyright © 2023 Elsevier Masson SAS. All rights reserved.)

Polyhandicap is characterized by a combination of profound intellectual disability and serious motor deficit, resulting in the extreme restriction of autonomy and communication. The aim of the EVAL-PLH (EVALuation PoLyHandicap) study is to identify the impact of socioeconomic, environmental, and epidemiological determinants on the health status of the persons with polyhandicap and the daily lives of their caregivers. EVAL-PLH is a prospective cohort study. The study involved persons with severe polyhandicap (who were cared for at reeducation centers, residential facilities, and one specialized pediatric/neurological department of a university hospital), their familial caregivers and the institutional caregivers. Data collection included sociodemographics, heath status, and psychocomportemental information. Data have been collected at 2 points (2015-2016 and 2020-2021). The French EVAL-PLH cohort is the first cohort study focusing on persons with polyhandicap, their families, and the health care workers caring for them. The sustainability of the device is essential to assist patients, families, clinicians, and health decision-making authorities in the optimization of care management., (© 2022. The Author(s).)

Introduction: A better understanding of the natural course of the health status of patients with polyhandicap may optimize preventive and curative care management. From a large sample of patients aged from 3 to 25 years, we reported the description of their health status., Methods: This was an 18-month cross-sectional study including patients aged from 3 to 25 years with a combination of severe motor deficiency and profound intellectual impairment. The patients were recruited from 4 specialized rehabilitation centers, 9 residential facilities, and a pediatric/neurological department. The following data were collected: polyhandicap etiology, health status (impairments, comorbidities, and neurodevelopmental status), medical devices, and rehabilitation procedures., Results: A total of 545 patients were included (n=80 [3-5 years], n=166 [6-11 y], n=155 [12-17 y], and n=144 [18-25 y]). The etiology of polyhandicap was unknown for 11.5% of the cases. Behavioral disorders and (orthopedic and digestive) comorbidities were more frequent in the oldest age classes. The neurodevelopmental status of the patients was close to those of a 5- to 7-month-old child without progression across age. Gastrostomy was the most frequent device needed by the patients., Discussion/conclusion: Early detection and management of impairments and comorbidities may improve the disease course of the patients., (Copyright © 2019 Elsevier Masson SAS. All rights reserved.)

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, psycho-behavioural 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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Polyhandicap is defined as the combination of severe mental impairment and severe motor deficit resulting in reduced mobility and an extreme reduction in autonomy. Over the last 20years, care management for these patients has become more structured, however, their care pathway is not always optimal., Objective: To describe/compare the health characteristics, treatment and history of the care pathways of subjects who received care before and after 1990., Method: Multicentre cross-sectional study, population studied: patients with polyhandicap: (i) causal brain damage<3years, (ii) severe mental impairment, (iii) motor disability, (iv) reduced mobility, (v) extreme restriction of autonomy., Data Collected: clinical and medical, care procedures, treatments, history of care pathways., Results: Patients are divided into 2 groups: 545 patients who received care after 1990 and 330 before 1990. Older patients present more recurrent urinary infections, slow transit, behavioural disorders and pain, and are prescribed a greater number of drugs. For those who received care before 1990, the age of admission to an establishment is lower, with one-third receiving a consultation dedicated to the transition from paediatric to adult teams., Discussion/conclusion: The care sector for patients with polyhandicap makes it possible to meet their needs throughout their lives, however, there is still progress to be made in terms of formalisation and of coordinating the care pathway in order to facilitate the transition from paediatric to adult services/establishments., (Copyright © 2019 Elsevier Masson SAS. All rights reserved.)

Background: Knowledge of the health status and care management of elderly individuals with polyhandicap* is lacking; however, a better understanding of the natural course of ageing in persons with severe and complex disability would help optimize preventive and curative care management strategies., Objectives: To describe persons with severe and complex disability aged 18-68 years by providing i) a description of their health status and ii) a description of their medications, medical devices and rehabilitation procedures., Methods: This was an 18-month cross-sectional study including people aged 18-68 years with a combination of severe motor deficiency and profound intellectual impairment. They were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a neurological department. The following data were collected: aetiology of severe and complex disability, health status, medical devices, and rehabilitation procedures., Results: A total of 474 persons with severe and complex disability were included (N = 219 [18-34 years], N = 151 [35-49 years], N = 104 [50-68] years). The aetiology of severe and complex disability was unknown for 13%-17% of persons with severe and complex disability across the 3 age classes. Behavioural disorders and pain were more frequent in the oldest age classes. Elderly persons with severe and complex disability had more severe but less unstable severe and complex disability. Their neurodevelopmental was close to that of a 4-month-old child without progression across age. Gastrostomy was the most frequent device needed by the persons with severe and complex disability., Conclusions: The longevity of persons with severe and complex disability is improving; some of these persons, among whom are the least unstable and with less comorbidity, can survive for more than 50 years due to the improvement of preventive actions and supportive care., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Polyhandicap (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., Method: We 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., Results: The 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., Conclusions: Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions., Competing Interests: The authors have declared that no competing interests exist.

Background: The 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., Methods: This 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., Results: A 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)., Conclusions: This study provides key elements of adequacy of care management modalities for polyhandicapped patients in France., Trial Registration: ClinicalTrials.gov NCT02400528., Competing Interests: The authors have declared that no competing interests exist.

Aim: Individuals with severe and complex disabilities, defined by a combination of profound intellectual impairment and serious motor deficit resulting in extreme dependence, often remain in hospital or at residential facilities. The aim of this study was to identify the determinants of quality of life (QoL) of 238 health care workers (HCWs) caring for individuals with severe and complex disabilities., Method: We conducted a cross-sectional study. The recruitment of the HCWs was performed in five French centres specializing in patients with severe and complex disabilities. The selection criteria were age above 18 years, being an institutional referent HCW (a resource person coordinating various issues for or about the patient), and agreeing to participate. Sociodemographic, health, professional variables, and psycho-behavioural (QoL, burn-out, and coping strategies) data were collected., Results: Of the 362 eligible HCWs, 65.7% returned the questionnaires. The scores of the physical and social dimensions of QoL were significantly lower, and the score of the psychological dimension significantly higher, than those of a comparison group. The main factors modulating QoL were age, financial difficulties, nature of coping strategy, and burn-out., Interpretation: This research provides preliminary evidence that caring for patients with severe and complex disabilities affects the QoL of HCWs. These results support the need for optimization of the work environments for HCWs., (© 2017 Mac Keith Press.)