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https://www.readbyqxmd.com/read/28943457/clinical-staging-of-fibrodysplasia-ossificans-progressiva-fop
#1
Robert J Pignolo, Frederick S Kaplan
Fibrodyplasia ossificans progressiva (FOP) is an ultra-rare genetic condition of heterotopic ossification (HO) that results in progressive loss of joint function, ultimately rendering movement impossible. Death is most commonly the result of thoracic insufficiency syndrome, or complications related to recurrent respiratory infections. There are no current treatments for FOP, but early and emerging clinical trials offer hope for this devastating disease. With the recent reporting of a comprehensive global natural history study, scales to assess joint dysfunction, and a more accurate prediction of joint survival, it is now possible to construct a conceptual framework for the clinical staging of FOP...
September 21, 2017: Bone
https://www.readbyqxmd.com/read/28943360/advance-care-planning-documentation-practices-and-accessibility-in-the-electronic-health-record-implications-for-patient-safety
#2
Evan Walker, Ryan McMahan, Deborah Barnes, Mary Katen, Daniela Lamas, Rebecca Sudore
CONTEXT: Documenting patients' advance care planning wishes is essential to providing value-aligned care, as is having this documentation readily accessible. Little is known about advance care planning documentation practices in the electronic health record. OBJECTIVES: Describe advance care planning documentation practices and the accessibility of documented discussions in the electronic health record. METHODS: Participants were primary care patients at the San Francisco VA Medical Center, were ≥60 years old, and had ≥2 chronic/serious health conditions...
September 21, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28943359/how-well-do-current-measures-assess-the-impact-of-advance-care-planning-on-concordance-between-patient-preferences-for-end-of-life-care-and-the-care-received-a-methodological-review
#3
REVIEW
Stephanie B Johnson, Phyllis N Butow, Ian Kerridge, Melanie L Bell, Martin Tattersall
No abstract text is available yet for this article.
September 21, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28942913/a-focused-review-of-safety-considerations-in-cancer-rehabilitation
#4
REVIEW
Susan Maltser, Adrian Cristian, Julie K Silver, G Stephen Morris, Nicole L Stout
Cancer and its treatments introduce various adverse effects that may affect survivors' physical, cognitive and psychological functioning. Frequently both tolerance to activity and exercise are affected as well. Rehabilitation providers should have substantive knowledge about the effect of cancer progression and common side effects associated with antineoplastic treatment to safely integrate rehabilitation interventions. Rehabilitation may mitigate loss of function and disability; however, these patients are among the most medically complex that providers treat...
September 2017: PM & R: the Journal of Injury, Function, and Rehabilitation
https://www.readbyqxmd.com/read/28941964/unmet-palliative-care-needs-among-patients-with-end-stage-kidney-disease-a-national-registry-study-about-the-last-week-of-life
#5
Lena Axelsson, Anette Alvariza, Jenny Lindberg, Joakim Öhlén, Cecilia Håkanson, Helene Reimertz, Carl-Johan Fürst, Kristofer Årestedt
CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden and therefore, more knowledge about the palliative care provided close to death is needed. OBJECTIVES: To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD. METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (ICD-10-SE; N18...
September 20, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28939708/the-decisions-interventions-and-goals-in-implantable-cardioverter-defibrillator-therapy-dignity-pilot-study
#6
Daniel B Kramer, Daniel Habtemariam, Yaw Adjei-Poku, Michelle Samuel, Diane Engorn, Matthew R Reynolds, Susan L Mitchell
BACKGROUND: Implantable cardioverter-defibrillators (ICDs) are commonly implanted in older patients, including those with multiple comorbidities. There are few prospective studies assessing the clinical course and end-of-life circumstances for these patients. METHODS AND RESULTS: We prospectively followed 51 patients with ICDs for up to 18 months to longitudinally assess in terms of (1) advance care planning, (2) health status, (3) healthcare utilization, and (4) end-of-life circumstances through quarterly phone interviews and electronic medical record review...
September 22, 2017: Journal of the American Heart Association
https://www.readbyqxmd.com/read/28939061/chemoradiotherapy-for-locally-advanced-squamous-cell-carcinoma-of-the-oropharynx-does-completion-of-systemic-therapy-affect-outcomes
#7
Michael Baine, Tim Dorius, Nathan Bennion, Morshed Alam, Lynette Smith, Weining Zhen, Apar Ganti
INTRODUCTION: Current standard of care for locally advanced squamous cell carcinoma of the oropharynx (LA-OPC) consists of concurrent chemoradiotherapy. Due to toxicities associated with this treatment, a significant portion of patients are unable to complete the systemic therapy portion of their treatment course. The impact of incomplete systemic therapy on patient outcomes remains unclear. METHODS: Demographic, treatment, and outcome data were retrospectively collected for patients with LA-OPC treated definitively with concurrent chemoradiotherapy between 2007 and 2014...
October 2017: Oral Oncology
https://www.readbyqxmd.com/read/28936892/initial-experience-with-cinematic-rendering-for-chest-cardiovascular-imaging
#8
Steven Rowe, Pamela Johnson, Elliot Fishman
Three-dimensional (3D) computed tomography (CT) with volume rendering (VR) and maximum intensity projection (MIP) is an integral component of CT interpretation for diagnosis and treatment planning of vascular pathology. Cinematic rendering (CR is a new rendering algorithm that incorporates a more advanced lighting model than that used for VR, to create photorealistic 3D CT images. The post-processing tool is not yet widely available and its ultimate clinical utility has yet to be assessed in well-designed studies...
September 22, 2017: British Journal of Radiology
https://www.readbyqxmd.com/read/28935629/paediatric-advance-care-planning-survey-a-cross-sectional-examination-of-congruence-and-discordance-between-adolescents-with-hiv-aids-and-their-families
#9
Maureen E Lyon, Ronald H Dallas, Patricia A Garvie, Megan L Wilkins, Ana Garcia, Yao Iris Cheng, Jichuan Wang
OBJECTIVES: To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs. METHODS: A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised...
September 21, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28935202/zeroing-out-preventable-disability-daring-to-dream-the-impossible-dream-for-dementia-care-recommendations-for-a-national-plan-to-advance-dementia-care-and-maximize-functioning
#10
EDITORIAL
Ara S Khachaturian, David P Hoffman, Lori Frank, Ronald Petersen, Zaven S Khachaturian
No abstract text is available yet for this article.
September 18, 2017: Alzheimer's & Dementia: the Journal of the Alzheimer's Association
https://www.readbyqxmd.com/read/28933995/identification-assessment-and-management-of-breast-oedema-after-treatment-for-cancer
#11
Marie Todd
Advances in breast cancer management, including breast-conserving surgery, have resulted in an increase in the incidence of breast oedema. However, this is addressed by professionals less often than arm lymphoedema. Breast oedema results in significant physical and psychological morbidity, makes finding a comfortably fitting bra very difficult, and can act as a reminder of the initial breast cancer diagnosis. Psychological difficulties can be compounded by clinicians' failure to acknowledge the impact. Assessing and managing breast oedema requires a sensitive, skilled approach to ensure all the relevant issues are identified and addressed in a comprehensive care plan; taking time to listen to patients and acknowledging the impact can be very therapeutic...
September 2, 2017: International Journal of Palliative Nursing
https://www.readbyqxmd.com/read/28933994/decision-making-for-people-living-with-dementia-by-their-carers-at-the-end-of-life-a-rapid-scoping-review
#12
Sue Barker, Mary Lynch, Jane Hopkinson
BACKGROUND: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. AIM: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. DESIGN: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home...
September 2, 2017: International Journal of Palliative Nursing
https://www.readbyqxmd.com/read/28933190/assessment-of-capabilities-in-persons-with-advanced-stage-of-dementia-validation-of-the-montessori-assessment-system-mas
#13
Jérôme Erkes, Cameron J Camp, Stéphane Raffard, Marie-Christine Gély-Nargeot And, Sophie Bayard
This study evaluated the validity and reliability of the Montessori Assessment System. The Montessori Assessment System assesses preserved abilities in persons with moderate to severe dementia. In this respect, this instrument provides crucial information for the development of effective person-centered care plans. A total of 196 persons with a diagnosis of dementia in the moderate to severe stages of dementia were recruited in 10 long-term care facilities in France. All participants completed the Montessori Assessment System, the Clinical Dementia Rating Scale and/or the Mini Mental State Examination and the Severe Impairment Battery-short form...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/28932992/the-impact-of-a-primary-care-education-program-regarding-cancer-survivorship-care-plans-results-from-an-engineering-primary-care-and-oncology-collaborative-for-survivorship-health
#14
SarahMaria Donohue, James E Haine, Zhanhai Li, Elizabeth R Trowbridge, Sandra A Kamnetz, David A Feldstein, James M Sosman, Lee G Wilke, Mary E Sesto, Amye J Tevaarwerk
Survivorship care plans (SCPs) have been recommended as tools to improve care coordination and outcomes for cancer survivors. SCPs are increasingly being provided to survivors and their primary care providers. However, most primary care providers remain unaware of SCPs, limiting their potential benefit. Best practices for educating primary care providers regarding SCP existence and content are needed. We developed an education program to inform primary care providers of the existence, content, and potential uses for SCPs...
September 20, 2017: Journal of Cancer Education: the Official Journal of the American Association for Cancer Education
https://www.readbyqxmd.com/read/28931489/the-endoscopist-and-malignant-and-non-malignant-biliary-obstruction
#15
REVIEW
S P Pereira, G Goodchild, G J M Webster
Patients with biliary strictures often represent a diagnostic and therapeutic challenge, due to the site and complexity of biliary obstruction and wide differential diagnosis. Multidisciplinary decision making is required to reach an accurate and timely diagnosis and to plan optimal care. Developments in endoscopic ultrasound and peroral cholangioscopy have advanced the diagnostic yield of biliary endoscopy, and novel optical imaging techniques are emerging. Endoscopic approaches to biliary drainage are preferred in most scenarios, and recent advances in therapeutic endoscopic ultrasound allow drainage where the previous alternatives were only percutaneous or surgical...
September 18, 2017: Biochimica et Biophysica Acta
https://www.readbyqxmd.com/read/28930061/promoting-adoption-of-medication-for-opioid-and-alcohol-use-disorders-through-system-change
#16
James H Ford, Amanda J Abraham, Nicoleta Lupulescu-Mann, Raina Croff, Kim A Hoffman, Kelly Alanis-Hirsch, Mady Chalk, Laura Schmidt, Dennis McCarty
OBJECTIVE: The Medication Research Partnership (MRP), a collaboration between a national commercial health plan and nine addiction treatment centers, implemented organizational and system changes to promote use of federally approved medications for treatment of alcohol and opioid use disorders. METHOD: A difference-in-differences analysis examined change over time in the percentage of patients receiving a prescription medication for alcohol or opioid use disorders treated in MRP (n = 9) and comparison (n = 15) sites...
September 2017: Journal of Studies on Alcohol and Drugs
https://www.readbyqxmd.com/read/28929291/evaluation-of-an-advance-care-planning-web-based-resource-applicability-for-cancer-treatment-patients
#17
Martha A Cresswell, Carole A Robinson, Gillian Fyles, Joan L Bottorff, Rebecca Sudore
PURPOSE: The purpose of this study was to explore the acceptability, applicability, and understandability of a promising advance care planning (ACP) web-based resource for use with oncology patients, and determine whether revisions to the website would be necessary before implementation into oncology care. The resource is called PREPARE ( www.prepareforyourcare.org ) and it had not been tested for use within oncology, but had previously been shown to influence the readiness of older, community-dwelling adults to engage in ACP behaviors...
September 19, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/28927451/implementing-non-invasive-prenatal-testing-for-aneuploidy-in-a-national-healthcare-system-global-challenges-and-national-solutions
#18
Rachèl V van Schendel, Carla G van El, Eva Pajkrt, Lidewij Henneman, Martina C Cornel
BACKGROUND: Since the introduction of non-invasive prenatal testing (NIPT) in 2011, mainly by commercial companies, a growing demand for NIPT from the public and healthcare professionals has been putting pressure on the healthcare systems of various countries. This study identifies the challenges of establishing a responsible implementation of NIPT for aneuploidy in prenatal healthcare, by looking at the Netherlands. METHODS: A mixed methods approach involving 13 stakeholder interviews, document analysis and (participatory) observations of the Dutch NIPT Consortium meetings were used...
September 19, 2017: BMC Health Services Research
https://www.readbyqxmd.com/read/28926294/predictors-of-death-in-the-hospital-for-patients-with-chronic-serious-illness
#19
Katy Hicks, Lois Downey, Ruth A Engelberg, James A Fausto, Helene Starks, Ben Dunlap, James Sibley, William Lober, Nita Khandelwal, Elizabeth T Loggers, J Randall Curtis
BACKGROUND: Most people prefer to die at home, yet most do not. Understanding factors associated with terminal hospitalization may inform interventions to improve care. OBJECTIVE: Among patients with chronic illness receiving care in a multihospital healthcare system, we identified the following: (1) predictors of death in any hospital; (2) predictors of death in a hospital outside the system; and (3) trends from 2010 to 2015. DESIGN: Retrospective cohort using death certificates and electronic health records...
September 19, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28925295/characteristics-of-patients-with-existing-advance-directives-evaluating-motivations-around-advance-care-planning
#20
Joanne E Genewick, Dorothy M Lipski, Katherine M Schupack, Angela L H Buffington
INTRODUCTION: Although 80% of patients endorse an advance directive (AD), less than 35% of American adults have a documented AD. Much research has been done on barriers to creating ADs; however, there is a paucity of research addressing motivations for creating ADs. Previous research has identified 4 categories of influence for engaging in advance care planning (ACP). This study aimed to quantify the influence of these 4 motivating categories in creating an AD. METHODS: Participants included 238 adults with documented ADs...
January 1, 2017: American Journal of Hospice & Palliative Care
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