The Quality of Life of Long Term Survivors of Patients with Biliary Atresia

2021 ◽  
Author(s):  
Melanie Le ◽  
Konrad Reinshagen ◽  
Christian Tomuschat
Keyword(s):  
Quality Of Life ◽  
Liver Transplantation ◽  
Biliary Atresia ◽  
Long Term Results ◽  
Cochrane Library ◽  
Healthy Controls ◽  
Term Care ◽  
Associated Malformations

Abstract Purpose: Advances in surgical techniques and perioperative care have improved patients' short-and mid-term postoperative outcomes with Biliary Atresia (BA). However, the long-term results of these patients have not been thoroughly investigated. This systematic review aims to determine the long-term outcomes and the patients' health-related Quality of life (HrQoL) with their native livers or liver transplantation. Methods: A systematic literature-based search for relevant cohorts was performed using Pubmed/Medline, Cochrane Library from its inception to August 2021. Original studies reporting on BA, Hepatoportoenterostomie, portoenterostomy, Kasai, Liver transplantation, Quality of life, or HrQoL were included. Pooled prevalence has been calculated for cholangitis, secondary liver transplantation, or associated malformations using MetaXL (version 5.3). Subgroup analysis on HrQoL followed surgical treatment after BA was calculated by using RevMan (version 5.4).Results: 12 articles were considered for data synthesis. Nine studies compared biliary atresia patients to an age-matched healthy reference group. 4/9 (n = 338) of these studies indicated lower scores for biliary atresia patients; 5/9 (n = 127) stated similar health status. A Forest plot analysis including all studies with total HrQoL showed a tendency of higher scores towards healthy controls (MD -0.79, 95% CI: -6.00-4.41). Comparing patients after Kasai Hepatoportoenterostomy with healthy controls demonstrated favorable outcomes for the control group (MD -3.22, 95% CI: -7.20-0.75) with no statistical significance (p = 0.11). The pooled estimation of the prevalence of cholangitis, secondary liver transplantation and associated malformations are 0.33 (95% CI: 0.06–0.66), 0.59 (95% CI: 0,42–0.75) and 0.13 (95% CI: 0,01–0.33).Conclusion: Biliary atresia patients have an overall high prevalence of progressive liver-related complications and risk of lower HrQoL compared to their healthy peers. Furthermore, those patients who received liver transplantation appear to have the same Quality of life as those living with their native livers. Targeted and evidence-based follow-up procedures and transitional care are essential to meet these patients' long-term care needs. Prospective and multicenter research das focuses on the attributes and predictors of the long-term prognosis of patients with biliary atresia are necessary.

Liver transplantation for Wilson???s disease: long-term results and quality-of-life assessment

2003 ◽  
pp. 1003-1006 ◽  
Author(s):  
Robert P. Sutcliffe ◽  
Donal D. Maguire ◽  
Paolo Muiesan ◽  
Anil Dhawan ◽  
Giorgina Mieli-Vergani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Liver Transplantation ◽  
Life Assessment ◽  
Long Term Results ◽  
Quality Of Life Assessment

Long-term Results and Quality of Life Assessment in Biliary Atresia Patients

2018 ◽  
Vol 66 (4) ◽  
pp. 570-574 ◽  
Author(s):  
Carol Wing Yan Wong ◽  
Patrick Ho Yu Chung ◽  
Paul Kwong Hang Tam ◽  
Kenneth Kak Yuen Wong
Keyword(s):  
Quality Of Life ◽  
Biliary Atresia ◽  
Life Assessment ◽  
Long Term Results ◽  
Quality Of Life Assessment

scholarly journals 106 - Environmental Influences on the Cognitive and Psychological Well Being of Older Adults with Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 15-16
Author(s):  
William E. Reichman ◽  
L. Bradford Perkins ◽  
Hilde Verbeek
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Physical Environment ◽  
Culture Change ◽  
Long Term Care ◽  
Small Scale ◽  
Term Care

This symposium will review the latest data on the influence of environmental design and its attributes on the cognitive and psychological wellbeing of older adults living with dementia. The presenters will cover the myriad ways in which the physical environment of care can adapt to the changing demands of older adults with sensory, motor and cognitive deficits and foster optimal functioning and quality of life. The role of emerging technologies will also be reviewed as they complement the contribution of the design of the physical environment to the wellbeing of older adults with cognitive impairment. Information will be offered through a review of the existing research literature as well as case studies that illustrate the impact of environmental modification on fostering wellbeing and minimizing the emergence of the behavioral and psychological symptoms of dementia. The presenters will represent and integrate sensibilities that have emerged from the fields of architecture, cognitive neuroscience and psychology.How the Principles of the Culture Change Movement Inform Environmental Design and the Application of Technology in the Care of Older Adults Living with DementiaWilliam E. ReichmanThe culture change movement informs a number of principles that have been applied to more contemporary design concepts for the congregate care of older adults living with dementia. This talk will review the core tenets of the Culture Change Movement as exemplified by the Greenhouse, Dementia Village and other innovative models of congregate long-term care. Specific reference will be made to how these tenets have been operationalized around the world into the design of programming and the creation of residential care environments that foster a better quality of life for older adults and an enhanced work environment for care providers. This talk will also include the emerging role of technologies that complement innovative design of the environment and which foster optimized social and recreational functioning of older adults living with dementia.A Better Life Through a Better Nursing Home DesignL. Bradford PerkinsOver the last 20 years there has been extensive experimentation related to the role of the environment in the housing, care and treatment of persons with Alzheimer’s and other age related dementias. Prior to that time the typical housing and care environment was a locked unit in a skilled nursing or other restrictive senior living facility. In 1991 the Presbyterian Association on Aging in Western Pennsylvania opened Woodside Place on its Oakmont campus. This small 36 bed facility was designed to incorporate the latest research and care experience with persons suffering from these issues. This one small project, as well as the long post occupancy research led by Carnegie Mellon University, clearly demonstrated that individuals with Alzheimer’s and related forms of dementia could lead a healthier, happier, higher quality of life in a more residential, less restrictive environment. Not everything in this pioneering project worked, and five generations of living and care models have followed that have refined the ideas first demonstrated by Woodside Place. Bradford Perkins, whose firm designed Woodside Place and over 100 other related projects, will discuss what was learned from Woodside Place as well as the five generations of projects (and post occupancy research) that followed.Innovative dementia care environments as alternatives for traditional nursing homes: evidence and experiences from the NetherlandsHilde VerbeekKey goals of the dementia care environment focus on increasing autonomy, supporting independence and trying to enable one’s own lifestyle for as long as possible. To meet these goals, innovative, small-scale and homelike care environments have been developed that have radically changed the physical, social and organizational aspects of long-term care in the Netherlands. This presentation discusses various Dutch models that have implemented small-scale and homelike care environments, including green care farms, dementia village and citizen initiatives. The models reflect a common care concept, focusing on residents’ remaining strengths, providing opportunity for choice and aiming to sustain a sense of self and control. A small number of residents (usually 6 to 8) live together in a homelike environment and nursing staff are part of the household. Residents are encouraged to participate in daily household activities, emphasizing normalization of daily life with person-centred care. The physical environment resembles an archetypal home. This talk presents the scientific evidence on the impact and effects of these small-scale, homelike models on residents, their family caregivers and staff. Furthermore, the presentation will highlight working approaches and how these initiatives have positively influenced routine care across the long-term care spectrum.

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

Long-term Results, Late Complications and Quality of Life in a Series of Adjustable Gastric Banding

2004 ◽  
Vol 14 (5) ◽  
pp. 648-654 ◽  
Author(s):  
Tarja Martikainen ◽  
Elina Pirinen ◽  
Esko Alhava ◽  
Eero Poikolainen ◽  
Matti Pääkkönen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Gastric Banding ◽  
Adjustable Gastric Banding ◽  
Late Complications ◽  
Long Term Results

scholarly journals Older People in Long-Term Care Institutions: A Case of Multidimensional Social Exclusion

2021 ◽  
pp. 297-309
Author(s):  
Feliciano Villar ◽  
Rodrigo Serrat ◽  
Annette Bilfeldt ◽  
Joe Larragy
Keyword(s):  
Quality Of Life ◽  
Older People ◽  
Social Relationships ◽  
Support Services ◽  
Long Term Care ◽  
Models Of Care ◽  
Term Care ◽  
The Impact

AbstractLiving in a long-term care (LTC) institution provides older people experiencing health and social problems with a comprehensive range of support services that address their quality of life. Despite access to such services, challenges arise in relation to their participation in key activities both within and outside the institution. This chapter examines such challenges, reviewing and describing ways to prevent exclusion along various domains, specifically social relationships, civic participation and socio-cultural life. Firstly, we discuss ways in which bio-medical models of care and the quality control systems, which are dominant in LTC services, standardise care, tending to put decisions exclusively in hands of staff, taking away residents’ autonomy, and ultimately curtailing rights and citizenship status. Secondly, we examine how LTC services might prevent such exclusion and promote older people’s participation in at least four respects: (1) prompting and supporting residents’ ability to take decisions on their own care, (2) favouring the maintenance and creation of social relationships, (3) enabling residents’ participation in the activities and management of the institution, and (4) guaranteeing residents’ rights and full access to citizenship. We discuss the impact and limitations of recent initiatives put into practice in these areas of practice.

scholarly journals Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

2016 ◽  
Vol 42 (3-4) ◽  
pp. 186-197 ◽  
Author(s):  
Maartje S. Klapwijk ◽  
Monique A.A. Caljouw ◽  
Marjoleine J.C. Pieper ◽  
Jenny T. van der Steen ◽  
Wilco P. Achterberg
Keyword(s):  
Quality Of Life ◽  
Social Relations ◽  
Long Term Care ◽  
Neuropsychiatric Symptoms ◽  
Pulmonary Diseases ◽  
Severe Dementia ◽  
Cross Sectional ◽  
Term Care

Background: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). Material and Methods: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. Results: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. Conclusion: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

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