scholarly journals Management of Persons with Hemophilia A with Inhibitors After Emicizumab Approval

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 5020-5020
Author(s):  
Anisha Patel ◽  
Karina Raimundo ◽  
Corey Stepule ◽  
Jennifer Whiteley ◽  
Richard H Ko
Keyword(s):  
Quality Of Life ◽  
Disease Management ◽  
Surgical Management ◽  
Hemophilia A ◽  
Qualitative Interviews ◽  
Years Of Experience ◽  
The Us

Abstract Introduction: Emicizumab, a bispecific antibody to factors IXa/X, was approved by the Food and Drug Administration in 2017 for prophylactic treatment of persons with hemophilia A (PwHA) with inhibitors. Compared with other treatments for PwHA, emicizumab has a novel mechanism of action. It is the first hemophilia A (HA) treatment administered subcutaneously and has a much longer half-life than previous treatments; hence, disease management with emicizumab can be different. This study aimed to evaluate how physicians manage HA in patients treated with emicizumab. Methods: This qualitative analysis is the first phase of a planned mixed-methods approach study and comprised 1-hour, blinded telephone interviews with 5 hematologists in all 4 geographic regions of the US. Physicians were included if they met the following criteria: 1) MD or DO degree; 2) board-certified hematologist; 3) practice in the US; 4) ≥2 years of experience post-residency; and 5) currently treat PwHA. To evaluate experience with emicizumab, physicians were also required to have treated a minimum number of patients receiving emicizumab (5 for physicians in hemophilia treatment centers [HTCs] and 3 for physicians in non-HTCs). A total of 5 qualitative interviews were conducted in May and June 2018 to understand the physicians' perspectives on treating PwHA with emicizumab. Interview topics included general management of PwHA, inhibitor screening and testing, management of PwHA with inhibitors, and physicians' experiences treating patients with emicizumab. We report common themes that descriptively emerged from the qualitative interviews, which will inform survey development for the quantitative phase of the study. Results: Of the 5 physicians, 3 were adult hematologists and 4 physicians reported seeing patients in an HTC. All physicians reported having at least 10 years of experience in practice post-residency. Regarding management of PwHA, physicians indicated disease severity, inhibitor status and annual bleed rate as critical factors in guiding treatment decision making. Patients who develop inhibitors require more medical engagement and frequent monitoring. Physicians reported that, from their experience, emicizumab results in a reduction in bleeds, leading to fewer office visits and less monitoring in PwHA with inhibitors. In addition, physicians reported that the need for disease management, even among patients with a phenotype with more bleeding, is lower as a result of emicizumab treatment due to decreased bleed rate and a reduction in need for additional treatments. Physicians reported that emicizumab's subcutaneous, once-weekly dosing leads to improved patients' quality of life and confidence in performing activities without bleeds. Acute bleed management with emicizumab was reported to be slightly different than before, given the boxed warning around concomitant treatment with activated prothrombin complex concentrate; however, the physicians indicated that they still recommend to treat bleeds as soon as one is suspected. Physicians articulated that some questions remain, including the role of immune therapy induction (ITI), use in low-titer inhibitors, and surgical management in patients treated with emicizumab. Physicians reported that there have been no significant access challenges and none of their patients have discontinued therapy; however, long-term monitoring and safety data are needed. Conclusions: This qualitative study suggests that management of PwHA with inhibitors receiving emicizumab is evolving. The interviewed physicians reported that their patients receiving emicizumab experience fewer bleeds and have an improved quality of life. However, questions regarding the role of ITI, surgical management, and long-term safety of emicizumab remain. Future research will provide additional insights into the current management of PwHA with inhibitors treated with emicizumab among US physicians. Disclosures Patel: Genentech Inc: Employment. Raimundo:Genentech Inc: Employment, Other: Ownership interests PLC. Stepule:MedPanel, Inc.: Employment. Whiteley:Genentech, Inc.: Employment, Other: Ownership interests none PLC. Ko:Genentech Inc: Employment; F. Hoffmann-La Roche Ltd: Other: Ownership interests non-PLC.

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.

Palliative Care

2015 ◽  
pp. 105-123
Author(s):  
May Hua
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Intensive Care ◽  
Critical Illness ◽  
Serious Illness ◽  
Surgical Units ◽  
Potential Benefits

Palliative care is a specialty of medicine that focuses on improving quality of life for patients with serious illness and their families. As the limitations of intensive care and the long-term sequelae of critical illness continue to be delimited, the role of palliative care for patients that are unable to achieve their original goals of care, as well as for survivors of critical illness, is changing and expanding. The purpose of this chapter is to introduce readers to the specialty of palliative care and its potential benefits for critically ill patients, and to present some of the issues related to the delivery of palliative care in surgical units.

Attitudes Toward Intelligent Technologies

2011 ◽  
pp. 231-252
Author(s):  
Lorenza Tiberio ◽  
Massimiliano Scopelliti ◽  
Maria Vittoria Giuliani
Keyword(s):  
Quality Of Life ◽  
Nursing Homes ◽  
Elderly People ◽  
Term Care ◽  
Care Services ◽  
Care Giving ◽  
Human Care

Nursing homes provide long-term care services and can help preserve the quality of life of elderly people subject to physical and cognitive impairments. In this chapter, we explore the role of intelligent technologies as a supplement to human care-giving and the potential to improve quality of life for both older adults and their caregivers in nursing homes. A study was conducted on elderly people’s and caregivers’ attitudes toward the use of intelligent technologies in nursing homes, with the aim of understanding in which domains of everyday activities the application of intelligent technologies can be more suitable. Results showed that attitude toward the application of intelligent technologies in nursing homes is positive, although multifaceted. Elderly people and caregivers considered intelligent technologies as relevant devices for the improvement of quality of life in different domains. Nonetheless, differences related to the role that technologies played in nursing homes clearly emerged.

Surgical management for venous leg ulcers: The role of hope, investment and agency

2016 ◽  
Vol 23 (8) ◽  
pp. 1075-1084
Author(s):  
Philippa Tollow ◽  
Jane Ogden
Keyword(s):  
Quality Of Life ◽  
Surgical Management ◽  
Leg Ulcers ◽  
Structured Interviews ◽  
Traditional Treatment ◽  
Venous Surgery ◽  
Traditional Approaches ◽  
Opening Up

A recent systematic review suggests that minimally invasive venous surgery for the treatment of leg ulcers may have a greater impact on quality of life than traditional approaches. A total of 11 participants who had previously undergone surgical management for leg ulcers took part in semi-structured interviews regarding their experiences. Using thematic analysis, three themes were identified: ‘Living in Flux’, ‘Perceptions of Chronicity’ and ‘Expectations’. Surgical treatment may not only improve patients’ quality of life due to treatment of the condition but also by opening up a sense of hope, investment and agency not associated with traditional treatment approaches.

scholarly journals Role of cardiac biomarkers (troponin I and CK-MB) as predictors of quality of life and long-term outcome after cardiac surgery

2009 ◽  
Vol 12 (1) ◽  
pp. 22 ◽  
Author(s):  
Giovanni Landoni ◽  
Giuseppe Crescenzi ◽  
Massimiliano Gonfalini ◽  
Giovanna Bruno ◽  
Federico Pappalardo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cardiac Surgery ◽  
Troponin I ◽  
Cardiac Biomarkers ◽  
Term Outcome ◽  
Long Term Outcome

scholarly journals 519 - PET@home: Research protocol for a toolkit to improve care for non-residential long term care clients owning pets

2021 ◽  
Vol 33 (S1) ◽  
pp. 68-68
Author(s):  
Ruslan Leontjevas ◽  
Marie-José Enders-Slegers ◽  
Peter Reniers ◽  
Ine Declerq ◽  
Debby Gerritsen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Support Network ◽  
Social Support Network ◽  
Term Care ◽  
Care Workers ◽  
Residential Long Term Care

BackgroundOver half of the households in The Netherlands have one or more pets. In elderly people, owning a pet is associated with a better quality of life and less loneliness, anxiety, depression and agitation. Many non-residential long term care (LTC) clients rely on support of others to take care of their pets. However, that may place a significant burden on the social support network of the LTC client. Issues relevant to keeping pets are not explicitly incorporated in the Dutch Long-term Care Act. Many LTC organizations have no instruments for care workers, clients and their family (1) to consolidate the positive role of pets for clients’ quality of life and (2) to address whether it is possible to keep the pets and to organize care accordingly.Research ObjectivesTo help care workers, clients and their family to gain insight into the role of the pets in the clients’ life and their social support network; to develop practical instruments that help making decisions about owning and caring for pets.MethodPLAN: In months 0-16, a narrative systematic review will be conducted (STUDY 1.1) on the meaning of pets for elderly people in general. A qualitative STUDY 1.2 with LTC clients, their informal carers and care professionals will validate and further explore the topic. STUDY 1.3 and 1.4 develop and (cognitively) validate work cards for interviews of clients and relatives by care providers. In months 17-29, an Experience based co-design method (STUDIES 2.1-2.3) will be used to develop the PET@home toolkit. The method includes (1) discovery interviews (10 clients and their family), (2) focus groups with healthcare providers (N = 2x6); (3) focus groups with 6-8 clients and informal and professional carers. In STUDY 3.1, potential users will pre-test the Toolkit. In months 30-34, a process evaluation (STUDY 3.2) is performed in 10-15 clients. A dissemination and an implementation plan will be developed.ConclusionsThe project will result in an innovative PET@home toolkit that will help to assess the pets role in the clients’ quality of life and support network, and will help making decisions about owning and caring for pets.

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