Dying of amyotrophic lateral sclerosis

Neurology ◽  
2019 ◽  
Vol 93 (23) ◽  
pp. e2083-e2093 ◽  
Author(s):  
Jocelyn Zwicker ◽  
Danial Qureshi ◽  
Robert Talarico ◽  
Pierre Bourque ◽  
Mary Scott ◽  
...  
Keyword(s):  
Health Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Home Care ◽  
Home Visit ◽  
Care Service ◽  
Health Care Service ◽  
Large Population ◽  
Population Based ◽  
Cost Of Care ◽  
Lateral Sclerosis

ObjectiveTo describe health care service utilization and cost for decedents with and without amyotrophic lateral sclerosis (ALS) in the last year of life.MethodsUsing linked health administrative data, we conducted a retrospective, population-based cohort study of Ontario, Canada, decedents from 2013 to 2015. We examined demographic data, rate of utilization, and cost of health care services in the last year of life.ResultsWe identified 283,096 decedents in Ontario, of whom 1,212 (0.42%) had ALS. Decedents with ALS spent 3 times as many days in an intensive care unit (ICU) (mean 6.3 vs 2.1, p < 0.001), and twice as many days using complex continuing care (mean 12.7 vs 6.0, p < 0.001) and home care (mean 99.1 vs 41.3, p < 0.001). A greater percentage of decedents with ALS received palliative home care (44% vs 20%, p < 0.001) and palliative physician home visits (40% vs 18%, p < 0.001) than decedents without ALS. Among decedents with ALS, a palliative physician home visit in the last year of life was associated with reduced adjusted odds of dying in hospital (odds ratio 0.65, 95% confidence interval 0.48–0.89) and fewer days spent in the ICU. Mean cost of care in the last year of life was greater for those with ALS ($68,311.98 vs $55,773.48, p < 0.001).ConclusionsIn this large population-based cohort of decedents, individuals with ALS spent more days in the ICU, received more community-based services, and incurred higher costs of care in the last year of life. A palliative care physician home visit was associated with improved end of life outcomes; however, the majority of patients with ALS did not access such services.

scholarly journals Practices used by a home care team: implications for caregivers

2021 ◽  
Vol 74 (2) ◽  
Author(s):  
Yara Cardoso Silva ◽  
Kênia Lara Silva ◽  
Isabela Silva Câncio Velloso
Keyword(s):  
Health Care ◽  
Discourse Analysis ◽  
Qualitative Study ◽  
Home Care ◽  
Home Health Care ◽  
Care Service ◽  
Health Care Service ◽  
Home Health ◽  
Care Team ◽  
Power Relationship

ABSTRACT Objectives: to analyze the practices of a home care team and their implications for caregivers’ performance. Methods: qualitative study with data obtained from observation of 21 users, 30 caregivers and 6 professionals from the home health care service in a municipality in Minas Gerais, from February to June 2018. The material was analyzed from the perspective of discourse analysis according to Michel Foucault. Results: team interference upon caregivers is exercised by disciplinary practices and prescriptive, authoritative and surveilling behaviors. The team’s knowledge-power relationship determines caregivers’ acceptance through convincing or through difficulty of understanding assigned orientations. Educational practices would enable caregivers to be constituted as active, participative, empowered and reflective subjects. Final Considerations: team practices interfere with caregivers’ ways of acting and being and they have implications in objectification and subjectification processes.

scholarly journals Emancipatory practices of nurses in primary health care: the home visit as an instrument of health needs assessment

2014 ◽  
Vol 48 (spe) ◽  
pp. 119-125 ◽  
Author(s):  
Celia Maria Sivalli Campos ◽  
Bárbara Ribeiro Buffette Silva ◽  
Deisi Cristine Forlin ◽  
Carla Andréa Trapé ◽  
Iara de Oliveira Lopes
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Social Determinants Of Health ◽  
Social Determinants ◽  
Home Visit ◽  
Care Service ◽  
Health Care Service ◽  
Health Needs ◽  
Determinants Of Health ◽  
Primary Health

Objective Identify nurses’ emancipatory practices in primary care, to contribute to the improvement of health care. Method A case study type social research of qualitative nature, in which nurses of a primary health care service unit in São Paulo were interviewed. Results The home visit was identified as a nursing practice possible to be expanded in order to identify social determinants of health, triggering emancipatory practices in the service. This expansion occurred because the design of health care labour intended by the service team changed its focus from the traditional object of health services, the disease. Conclusion First, it is advocated that social policies lead projects with the purpose of improving health needs. On the other hand, the daily labour needs to provide opportunities for reflection and discussion of healthcare projects, leading workers to propose labour-processes targeted to both the social determinants of health and people’s illness.

scholarly journals The assessment of the knowledge and awareness about glaucoma in glaucoma patients and general population: a sample from Turkey

2017 ◽  
Vol 6 (1) ◽  
pp. 35 ◽  
Author(s):  
Gökçe Dağtekin ◽  
Zeynep Demirtaş ◽  
Aziz Soysal ◽  
Nilgün Yildirim ◽  
Fatih M. Önsüz ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Services ◽  
Care Service ◽  
Health Care Service ◽  
Preventive Health Care ◽  
Population Based ◽  
Healthy People ◽  
Care Services ◽  
Level Of Knowledge ◽  
Age Range

Background: The study aimed to evaluate the level of knowledge and awareness of glaucoma and their possible determinants in a group of people diagnosed with glaucoma and in a population based group without glaucoma.Methods: The study included people with an age range of 40 to 80years; 410 patients without glaucoma who admitted to primary health care service and 113 patients who admitted to hospitals with diagnosis of glaucoma. In addition to Glaucoma Knowledge Level Questionnaire (GKLQ), participants were asked about their socio-demographic characteristics, level of awareness and resources of the information about glaucoma. Multivariate logistic regression and multiple linear regression analyses were used to assess the variants which have impact on the level of the awareness about glaucoma and to evaluate the factors effective on the score of GKLQ, respectively.Results: The ratio of awareness about glaucoma was found to be 64.1% in people without glaucoma. The knowledge and awareness about glaucoma were found to be higher in glaucoma patients compared to healthy people but not at a desired level. The education level was the only factor effecting both awareness and knowledge about glaucoma.Conclusions: As awareness about glaucoma can lead to early detection, the assessment of the knowledge and awareness about glaucoma is very important in terms of disease prevention. Health education and preventive health care services should be programmed including for both glaucoma patients and healthy people based on the level of their education.

scholarly journals Feeding Tubes and Health Care Service Utilization in Amyotrophic Lateral Sclerosis: Benefits and Limits to a Retrospective, Multicenter Study Using Big Data

2017 ◽  
Vol 54 ◽  
pp. 004695801773242
Author(s):  
Keith M. Swetz ◽  
Stephanie M. Peterson ◽  
Lindsey R. Sangaralingham ◽  
Ryan T. Hurt ◽  
Shannon M. Dunlay ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
Median Time ◽  
Service Utilization ◽  
Care Service ◽  
Private Insurance ◽  
Health Care Service ◽  
Administrative Claims ◽  
Lateral Sclerosis ◽  
Privately Insured

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurologic disorder with predictable challenges regarding disease progression and end-of-life care. These include need for respiratory and nutritional support. Little is known about how such choices impact end-of-life health service utilization for these patients. Using OptumLabs Data Warehouse, a large administrative claims database with more than 150 million privately insured, geographically diverse enrollees, we sought to explore outcomes associated with the use of enteral nutrition (EN). Patients were of age ≥18 years, with first ALS diagnosis during calendar years 2006-2012, and 6 months of continuous health plan coverage before first diagnosis. EN use was identified using procedure codes. Data were summarized descriptively. Among 1974 patients with ALS, mean age was 60.0 ± 12.5 years, 41.8% were women, and 9.7% demonstrated use of EN. Median time from ALS diagnosis to evidence of EN was 211 days (interquartile range [IQR]: 70-426). Those receiving EN had greater aggregate comorbidity (47% with Charlson-Deyo Comorbidity Index ≥ 3 vs only 27% in non-EN subset). In total, 38.1% of patients had at least 1 hospitalization, with median time to hospitalization of 162 days. Unfortunately, the EN group ended coverage a median of 155 days after EN started (IQR: 63.5-388), thereby limiting ability to capture outcomes. Although many ALS patients were identified, EN use was lower than expected, due to being earlier in disease trajectory and lost to follow-up with transition from private insurance. As such, databases exclusively including privately insured patients may be suboptimal for detecting late complications of protracted illnesses.

scholarly journals Stroke and Telerehabilitation: A Brief Communication (Preprint)

2020 ◽  
Author(s):  
Ayisha Bashir
Keyword(s):  
Health Care ◽  
Home Care ◽  
Disease Transmission ◽  
Care Service ◽  
Quality Care ◽  
Health Care Service ◽  
Daily Monitoring ◽  
Care Services ◽  
Severely Handicapped

UNSTRUCTURED This rapid communication highlights stroke telerehabilitation, a health care service that provides daily monitoring of the care of patients recovering from stroke, delivering convenient and immediate feedback for patients, family, and caregivers. The delivery, management, and coordination of nursing care services, provided via telecommunications technology, is a convenient method of delivering health care to patients recovering from stroke. It is important to assess the service quality of the telehealth process and to establish the role of telehealth nursing and related technologies in the care of patients recovering from stroke. Studies show that even though both health professionals and participants have reported high levels of satisfaction and acceptance of telerehabilitation interventions, the quality of the evidence on telerehabilitation in poststroke care remains low. Conducting a quality study of telehealth rehabilitation for patients recovering from stroke will help assess if home health agencies with telehealth capabilities caring for patients recovering from stroke and patients with chronic diseases can provide quality care to patients in their home and fill this health care gap. Patients that are severely handicapped and impaired and unable to reside in their home environment are not included in telerehabilitation services provided by the home care agency. It would be informative to study the benefits of telerehabilitation and the care provided to patients recovering from stroke within nursing homes, given the need for social distancing to reduce disease transmission during the current coronavirus disease (COVID-19) global health pandemic. Using telerehabilitation would mean that patients have a lower risk of exposure to infectious agents. Further research into telehealth interventions and stroke management in home care is crucial.

scholarly journals Postacute-Stroke Management Problems in Home Care Service: A Qualitative Single-Centered Study in Yogyakarta, Indonesia

2022 ◽  
Author(s):  
Paryono Paryono ◽  
Mawaddah Ar Rochmah ◽  
Ismail Setyopranoto ◽  
Laksono Trisnantoro
Keyword(s):  
Health Care ◽  
Human Resources ◽  
Home Care ◽  
Care Service ◽  
Health Care Service ◽  
Structured Interview ◽  
Home Care Service ◽  
Hospital Personnel ◽  
Stroke Management ◽  
Management Problems

Abstract Objective This study explores the postacute-stroke management problems, particularly for patients with total dependency (Barthel Index <20), in home care service of Dr. Sardjito Hospital (SH) from the hospital personnel's and caregiver's points of view. Materials and Methods In-depth interviews with a semi-structured interview guide were conducted with hospital personnel and patients' caregivers based on the purposeful sampling. There were 10 hospital personnel that were interviewed: the director of medical service, head of home care unit, neurologists, general practitioners, nurses, and physiotherapist. There were eight caregivers who participated in the study. Statistical Analysis Data from the interviews were analyzed using systematic text condensation using Nvivo 12 plus. Results Our findings showed that all health personnel in SH agreed that home care service is a part of an integrated health care service for continuation of care. However, the preparedness by the hospital management is still lacking in infrastructures, such as standardized operational procedure, quality control, and financial system, as well as in terms of competent human resources and their welfare. In addition, the patient's family and caregiver are lacking in knowledge and independency to take care of the patients with the need of home care services' monitoring to deliver the expected home care for postacute-stroke's patient regularly. Conclusion Home care service is an act of implementing hospital obligation to fulfill the patients' rights. An established hospital policy to ensure a comprehensive home care service delivery is necessary. The capability and welfare of the health care personnel should be put into account for the standardized human resources.

scholarly journals Epidemiological effects in Amyotrophic Lateral Sclerosis from the application of a DTCP

2021 ◽  
Author(s):  
Massimo Esposito ◽  
Marcello Sartori ◽  
Emilio Terlizzi ◽  
Roberto Antenucci ◽  
Elena Braghieri ◽  
...  
Keyword(s):  
Public Health ◽  
Health Care ◽  
Care Pathway ◽  
Care Service ◽  
Health Care Service ◽  
Public Health Care ◽  
The Difference ◽  
Als Patients ◽  
Epidemiological Effects ◽  
Lateral Sclerosis

Abstract This article introduces the report on the difference occurred in management of ALS patients by an italian Public Health Care Service through 15 years with-and without DTCP (Diagnostic and Therapeutic Care Pathway) during three timeframes. The article illustrates Demography, Provenance and Territorial context of the patients in charge. The formalization of the staging-based ALS DTCP appears to have increased and improved the possibility of clinical taking in charge of patients.

scholarly journals Stroke and Telerehabilitation: A Brief Communication

10.2196/18919 ◽  
2020 ◽  
Vol 7 (2) ◽  
pp. e18919
Author(s):  
Ayisha Bashir
Keyword(s):  
Health Care ◽  
Home Care ◽  
Disease Transmission ◽  
Care Service ◽  
Quality Care ◽  
Health Care Service ◽  
Daily Monitoring ◽  
Care Services ◽  
Severely Handicapped

This rapid communication highlights stroke telerehabilitation, a health care service that provides daily monitoring of the care of patients recovering from stroke, delivering convenient and immediate feedback for patients, family, and caregivers. The delivery, management, and coordination of nursing care services, provided via telecommunications technology, is a convenient method of delivering health care to patients recovering from stroke. It is important to assess the service quality of the telehealth process and to establish the role of telehealth nursing and related technologies in the care of patients recovering from stroke. Studies show that even though both health professionals and participants have reported high levels of satisfaction and acceptance of telerehabilitation interventions, the quality of the evidence on telerehabilitation in poststroke care remains low. Conducting a quality study of telehealth rehabilitation for patients recovering from stroke will help assess if home health agencies with telehealth capabilities caring for patients recovering from stroke and patients with chronic diseases can provide quality care to patients in their home and fill this health care gap. Patients that are severely handicapped and impaired and unable to reside in their home environment are not included in telerehabilitation services provided by the home care agency. It would be informative to study the benefits of telerehabilitation and the care provided to patients recovering from stroke within nursing homes, given the need for social distancing to reduce disease transmission during the current coronavirus disease (COVID-19) global health pandemic. Using telerehabilitation would mean that patients have a lower risk of exposure to infectious agents. Further research into telehealth interventions and stroke management in home care is crucial.

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