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https://www.readbyqxmd.com/read/29328905/diagnosis-and-care-of-patients-with-mild-haemophilia-practical-recommendations-for-clinical-management
#1
REVIEW
Gary Benson, Günter Auerswald, Gerry Dolan, Anne Duffy, Cedric Hermans, Rolf Ljung, Massimo Morfini, Silva Zupančić Šalek
Mild haemophilia is defined by factor levels between 0.05 and 0.40 IU/mL and is characterised by traumatic bleeds. Major issues associated with mild haemophilia are that it may not present for many years after birth, and that awareness, even within families, may be low. Methodological problems exist in diagnosis, such as inconsistencies in results obtained from different assays used to measure factor levels in mild haemophilia. Advances in genetic testing provide insight into diagnosis as well as the likelihood of inhibitor development, which is not uncommon in patients with mild or moderate haemophilia and can increase morbidity...
November 14, 2017: Blood Transfusion, Trasfusione del Sangue
https://www.readbyqxmd.com/read/29328354/end-of-life-conversations-as-a-legacy
#2
Jeanne M Sorrell
Advance directives such as living wills and health care powers of attorney are important documents that offer patients ways to avoid unwanted care when they are unable to express their wishes. Although health care professionals have increased focus on advance care planning in recent years, approximately two thirds of American adults do not have advance medical directives. In addition, 90% of individuals believe that talking to loved ones about end-of-life wishes is important, but only 27% have done so. It is important for nurses to understand the complex factors that influence how individuals make health care decisions and identify ways to encourage conversations with family, friends, and health care providers to help clarify patients' wishes for endof-life care...
January 1, 2018: Journal of Psychosocial Nursing and Mental Health Services
https://www.readbyqxmd.com/read/29325441/five-year-experience-of-an-inpatient-palliative-care-unit-at-an-academic-referral-center
#3
Myrick C Shinall, Sara F Martin, Jill Nelson, Richard S Miller, Matthew W Semler, Eli E Zimmerman, Christy C Noblit, E Wesley Ely, Mohana Karlekar
BACKGROUND: Palliative care units (PCUs) staffed by specialty-trained physicians and nurses have been established in a number of medical centers. The purpose of this study is to review the 5-year experience of a PCU at a large, urban academic referral center. METHODS: We retrospectively reviewed a prospectively collected database of all admissions to the PCU at Vanderbilt University Medical Center in the first 5 years of its existence, from 2012 through 2017. RESULTS: Over these 5 years, there were 3321 admissions to the PCU...
January 1, 2018: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29323416/citizenship-and-community-mental-health-care
#4
Allison N Ponce, Michael Rowe
Citizenship is an approach to supporting the social inclusion and participation in society of people with mental illnesses. It is receiving greater attention in community mental health discourse and literature in parallel with increased awareness of social determinants of health and concern over the continued marginalization of persons with mental illness in the United States. In this article, we review the definition and principles of our citizenship framework with attention to social participation and access to resources as well as rights and responsibilities that society confers on its members...
January 11, 2018: American Journal of Community Psychology
https://www.readbyqxmd.com/read/29320792/-advanced-care-planning-and-its-relevance-for-emergency-and-intensive-care-medicine
#5
Friedemann Nauck, Georg Marckmann, Jürgen In der Schmitten
Like in other countries, advance care planning (ACP) is currently being implemented in Germany as a new concept to realise valid and effective advance directives. This concept comprises processes to explore and document individual preferences for future treatment, and to honour them at a time when the person is incapacitated. ACP aims to ensure that patients will be treated according to their preferences when they are no longer capable due to acute health crises or chronic diseases. This paper gives an overview of the concept of ACP with a focus on relevant issues for emergency and intensive care medicine...
January 2018: Anästhesiologie, Intensivmedizin, Notfallmedizin, Schmerztherapie: AINS
https://www.readbyqxmd.com/read/29319389/top-10-tips-palliative-care-clinicians-should-know-when-caring-for-patients-with-ovarian-cancer
#6
Brittany A Davidson, Haley A Moss, Arif H Kamal
The vast majority of women diagnosed with ovarian cancer present with advanced-stage disease with a five-year survival rate less than 50%. Studies have shown that in the past, gynecologic oncologists were not routinely collaborating with palliative care physicians resulting in goals of care planning often not occurring until the last 30 days before death. In recent years, professional societies have been increasingly more vocal about the importance of incorporating palliative care early in a patient's disease course...
January 10, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29314264/a-practical-guide-for-the-care-of-patients-with-end-stage-renal-disease-near-the-end-of-life
#7
Amar D Bansal, Jane O Schell
Most patients who rely on dialysis for treatment of end-stage renal disease (ESRD) never receive a kidney transplant. Therefore, it is important for nephrology providers to feel comfortable discussing the role of dialysis near the end of life (EOL). Advance care planning (ACP) is an ongoing process of learning patient values and goals in an effort to outline preferences for current and future care. This review presents a framework for how to incorporate ACP in the care of dialysis patients throughout the kidney disease course and at the EOL...
January 3, 2018: Seminars in Dialysis
https://www.readbyqxmd.com/read/29313756/data-needs-for-a-serious-illness-care-accountability-system-a-framework-and-recommendations
#8
Tom Valuck, Russ Montgomery
BACKGROUND: Successful implementation of a comprehensive accountability system for community-based serious illness care will require a robust data infrastructure. Data will be needed to support care delivery, quality measurement, value-based payment, and evaluation and monitoring. OBJECTIVE: The specific data needs in these areas need to be identified and understood, so that gaps in currently available data may be addressed. DESIGN: We developed a framework that includes the needed data and data infrastructure to support the features and characteristics of a serious illness care accountability system...
March 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29313129/characteristics-and-care-pathways-of-advanced-cancer-patients-in-a-palliative-supportive-care-unit-and-an-oncological-ward
#9
Sebastiano Mercadante, Paolo Marchetti, Claudio Adile, Amanda Caruselli, Patrizia Ferrera, Andrea Costanzi, Alessandra Casuccio
BACKGROUND: A supportive palliative care unit (SPCU) may have a positive impact on patients' care. The aim of this study was to compare the pattern of patients admitted to a specialized SPCU and to a traditional oncologic ward (OW) in a consecutive sample of advanced cancer patients. METHODS: Data on patients demographics, reasons for and kind of admission, care-giver, anticancer treatments, being on/off treatment or uncertain, origin setting, who proposed hospital admission, the use of opioids, and hospitalization were gathered...
January 8, 2018: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/29309686/congress-of-neurological-surgeons-systematic-review-and-evidence-based-guidelines-on-the-role-of-imaging-in-the-diagnosis-and-management-of-patients-with-vestibular-schwannomas
#10
Ian F Dunn, Wenya Linda Bi, Srinivasan Mukundan, Bradley N Delman, John Parish, Tyler Atkins, Anthony L Asher, Jeffrey J Olson
QUESTION 1: What sequences should be obtained on magnetic resonance imaging (MRI) to evaluate vestibular schwannomas before and after surgery? TARGET POPULATION: Adults with vestibular schwannomas. RECOMMENDATIONS: Initial Preoperative Evaluation Level 3: Imaging used to detect vestibular schwannomas should use high-resolution T2-weighted and contrast-enhanced T1-weighted MRI. Level 3: Standard T1, T2, fluid attenuated inversion recovery, and diffusion weighted imaging MR sequences obtained in axial, coronal, and sagittal plane may be used for detection of vestibular schwannomas...
December 20, 2017: Neurosurgery
https://www.readbyqxmd.com/read/29307849/implementing-routine-palliative-care-consultation-prior-to-lvad-implantation-a-single-center-experience
#11
Say Salomon, Hilary Frankel, Elizabeth Chuang, Serife Eti, Peter Selwyn
CONTEXT: Left-ventricular assist devices (LVADs) are increasingly used to improve quality of life for end-stage heart failure patients. The Joint Commission now requires pre-implantation palliative care assessment, however many palliative care teams have little experience providing this service. OBJECTIVE: To describe the integration of palliative services at one Center of Excellence for Heart and Vascular Care. METHODS: This is a retrospective chart review of all patients receiving LVADs at a single urban academic medical center from 1/2015 to 9/2016...
January 4, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29307208/implementation-issues-relevant-to-outpatient-neurology-palliative-care
#12
Benzi M Kluger, Michael J Persenaire, Samantha K Holden, Laura T Palmer, Hannah Redwine, Julie Berk, C Alan Anderson, Christopher M Filley, Jean Kutner, Janis Miyasaki, Julie Carter
BACKGROUND: There is growing interest in the application of palliative care principles to improve care for patients and families affected by neurologic diseases. We developed an interdisciplinary outpatient clinic for patients and families affected by neurologic disorders to better address the problems faced by our highest need patients. We have developed and improved this program over the past three years and share several of our most important lessons as well as ongoing challenges and areas where we see our clinic evolving in the future...
November 29, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/29303120/management-of-cleft-lip-and-palate-in-nigeria-a-survey
#13
V Akinmoladun, S Ademola, A Olusanya
BACKGROUND: Clefts of the lip and/or palate are the most common congenital craniofacial defects and second only to club foot among all congenital anomalies. The management of this condition is resource intensive due to the multidimensional needs. This survey was carried out to ascertain the current state of cleft management in Nigeria with emphasis on training, scope of management, and assessment of treatment outcome. MATERIALS AND METHODS: Structured questionnaires were administered to cleft surgeons based on professional and practitioners' register and the result of literature search for cleft surgeons whose names may not appear in the registers...
November 2017: Nigerian Journal of Clinical Practice
https://www.readbyqxmd.com/read/29302603/what-are-the-ethical-dimensions-in-the-profession-of-intensive-care-specialist
#14
REVIEW
Jean-Pierre Quenot, Fiona Ecarnot, Nicolas Meunier-Beillard, Auguste Dargent, Jean-Pierre Eraldi, François Bougerol, Audrey Large, Pascal Andreu, Jean-Philippe Rigaud
Two essential components of the profession of a medical doctor are the constant review of the patient's therapeutic project, and collaboration between healthcare professionals. The profession of intensive care unit (ICU) physician goes further in terms of responsibility, vis-à-vis the intensive treatments dispensed to the patients, and the physician's responsibilities towards the patient's family and the caregiving team, also bearing in mind that ICU care is costly in terms of human and financial resources...
December 2017: Annals of Translational Medicine
https://www.readbyqxmd.com/read/29302602/what-are-the-ethical-questions-raised-by-the-integration-of-intensive-care-into-advance-care-planning
#15
REVIEW
Jean-Pierre Quenot, Fiona Ecarnot, Nicolas Meunier-Beillard, Auguste Dargent, Audrey Large, Pascal Andreu, Jean-Philippe Rigaud
A major goal of intensive care units (ICUs) is to offer optimal management, but for many patients admitted to the ICU, they are unlikely to yield any lasting benefit. In this context, the ICU physician remains a key intermediary, particularly when a decision regarding possible limitation or withdrawal of life-sustaining therapy becomes necessary. The possibility of admission to the ICU, and the type of care the patient would like to receive there, should be integrated into the healthcare project in agreement with the patient, regardless of the stage of disease that the patient suffers from...
December 2017: Annals of Translational Medicine
https://www.readbyqxmd.com/read/29298714/paediatric-palliative-care-improves-patient-outcomes-and-reduces-healthcare-costs-evaluation-of-a-home-based-program
#16
P H Chong, J A De Castro Molina, K Teo, W S Tan
BACKGROUND: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service's longitudinal impact...
January 3, 2018: BMC Palliative Care
https://www.readbyqxmd.com/read/29298400/exploring-opportunities-for-primary-outpatient-palliative-care-for-adults-with-cystic-fibrosis-a-mixed-methods-study-of-patients-needs
#17
Mara R Hobler, Ruth A Engelberg, J Randall Curtis, Kathleen J Ramos, Miriam I Zander, Shacole S Howard, Christopher H Goss, Moira L Aitken
BACKGROUND: Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs. OBJECTIVES: (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs. METHODS: A mixed-methods study of adult patients (age ≥18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV1) <65% predicted] were recruited from a CF Center...
January 3, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29298109/the-progression-of-end-of-life-wishes-and-concordance-with-end-of-life-care
#18
Jennifer Hopping-Winn, Juliette Mullin, Laurel March, Michelle Caughey, Melissa Stern, Jill Jarvie
Since 2013, Kaiser Permanente Northern California has engaged in a systematic effort to elicit, document, and honor the care preferences of patients as they near the end of life. This is done through its Advanced Steps program, in which selected patients discuss their preferences for future medical care with their healthcare agent during a structured conversation with a trained advance care planning facilitator. The facilitator then translates the patient's wishes into an actionable medical order set using a Physician's Order for Life-Sustaining Treatment (POLST) form...
January 3, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29298104/associations-between-mild-cognitive-dysfunction-and-end-of-life-outcomes-in-patients-with-advanced-cancer
#19
Keiko Kurita, M Cary Reid, Eugenia L Siegler, Eli L Diamond, Holly G Prigerson
BACKGROUND: Cognitive function of patients with advanced cancer is frequently compromised. OBJECTIVE: To determine the extent that patients' cognitive screening scores was associated with their end-of-life (EoL) treatment preferences, advance care planning (ACP), and care. DESIGN: Patients were interviewed at baseline and administered a cognitive screen. Caregivers completed a postmortem assessment. SETTING/SUBJECTS: Patients with distant metastases and disease progression after first-line chemotherapy and their caregivers (n = 609) were recruited from outpatient clinics and completed baseline and postmortem assessments...
January 3, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29290278/validation-of-the-decisional-conflict-scale-for-evaluating-advance-care-decision-conflict-in-community-dwelling-older-adults
#20
JinShil Kim, Shinmi Kim, Sun Woo Hong, Se-Won Kang, Minjeong An
PURPOSE: Decisional conflict is a significant and important barrier in end-of-life care planning, and it is often encountered in health professionals' discussions with patients and their families. Little is known about the measurement of decisional conflict, and existing measures are not suitable for all contexts. In this study, psychometric properties of the Decisional Conflict Scale, which was translated for the first time into Korean [Korean version of DCS (K-DCS)], were examined. METHODS: A sample of 273 community-dwelling elders was surveyed (mean age: 77...
December 2017: Asian Nursing Research
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