Adequacy of care management of patients with polyhandicap in the French health system: A study of 782 patients.
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ABSTRACT: 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.
SUBMITTER: Rousseau MC
PROVIDER: S-EPMC6034799 | biostudies-literature | 2018
REPOSITORIES: biostudies-literature
Publications
Adequacy of care management of patients with polyhandicap in the French health system: A study of 782 patients.
Rousseau Marie-Christine MC Billette de Villemeur Thierry T Khaldi-Cherif Sherezad S Brisse Catherine C Felce Agnès A Baumstarck Karine K Auquier Pascal P
PloS one 20180706 7
<h4>Background</h4>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.<h4>Methods</h4>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. ...[more]
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Project description: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.
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Project description:ObjectivesPolyhandicap (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.DesignCross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France).SettingsPLH children were recruited from a specialised paediatric/neurological department.ParticipantsThe selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin.Outcomes measuresFrom 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).ResultsEighty-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.ConclusionsSome 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 numberNCT02400528.
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Project description:ObjectiveTo understand how lack of attachment to a regular primary care provider influences patients' outlooks on primary care, ability to address their health care needs, and confidence in the health care system.DesignQualitative descriptive study using semistructured interviews.SettingCanadian provinces of Nova Scotia, Ontario, and Quebec.ParticipantsPatients aged 18 years or older who were unattached or had become attached within 1 year of being interviewed and who resided in the province in which they were interviewed.MethodsForty-one semistructured interviews were conducted, during which participants were asked to describe how they had become unattached, their searches to find new primary care providers, their perceptions of and experiences with the centralized waiting list in their province, their experiences seeking care while unattached, and the impact of being unattached on their health and on their perceptions of the health care system. Interviews were transcribed and analyzed using a thematic approach.Main findingsTwo main themes were identified in interviews with unattached or recently attached patients: unmet needs of unattached patients and the impact of being unattached. Patients' perceived benefits of attachment included access to care, longitudinal relationships with health care providers, health history familiarity, and follow-up monitoring and care coordination. Being unattached was associated with negative effects on mental health, poor health outcomes, decreased confidence in the health care system, and greater pre-existing health inequities.ConclusionHaving a regular primary care provider is essential to having access to high-quality care and other health care services. Attachment also promotes health equity and confidence in the public health care system and has broader system-level, social, and policy implications.
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Project description:BackgroundThe integration of Connected Health Devices (CHDs) is growing within mobile health (mHealth) and telemedicine, encouraged by institutions and industries. The idea is to improve lifestyle habits and health behaviors as a preventive goal in an aging population with fewer physicians available. However, their ill-defined place in health care does not promote their use in current medical practice.ObjectiveThe primary objective of this study was to quantify CHDs' use rate by general practitioners (GPs). A secondary objective was to evaluate their benefits and limitations in usual care.MethodsA cross-sectional study through an Internet-based survey was addressed to French GPs via regional medical unions and continuous education agencies, supplemented with an informative website, from March 2015 to July 2015. Surveys where either the form was insufficiently filled or the main question was left unanswered were excluded from the study.ResultsA total of 1084 answers were analyzed, of which 19.46% (211/1084, 95% CI 17.1-21.8) GPs used CHDs, and 10.15% (110/1084, 95% CI 8.5-12.1) prescribed a CHD. CHD users statistically prescribed more CHDs (7.38% [80/1084] in the user group vs 2.86% [31/1084] in nonusers; P<.001) and were more likely to use them in the future. Major interests in their utilization were in patient monitoring for 84.96% (921/1084) and patient education for 75.83% (822/1084), especially for diabetes (89.67%, 972/1084) and hypertension (84.13%, 912/1084). Generated data had to be managed securely by the patient primarily for 85.79% (930/1084) of the GPs. CHDs had to not constrain GPs outside clinical consultation, nor restrain their time for 75.83% (822/1084). Additional actors in patient care were not desired for 79.98% (867/1084) of the GPs. Questions about data management issues and technical difficulties were raised.ConclusionsCHDs are little used by French GPs and even less prescribed to their patients, as only a few GPs use these tools. Their benefits as tools of patient empowerment, although expected, remain to be demonstrated in real-life setups.
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