scholarly journals Quality of Web Information About Palliative Care on Websites from the United States and Japan: Comparative Evaluation Study (Preprint)

2017 ◽  
Author(s):  
Kouichi Tanabe ◽  
Kaho Fujiwara ◽  
Hana Ogura ◽  
Hatsuna Yasuda ◽  
Nobuyuki Goto ◽  
...  
Keyword(s):  
Palliative Care ◽  
Comparative Evaluation ◽  
Medical Information ◽  
Evaluation Study ◽  
The United States ◽  
Effect Sizes ◽  
Web Information ◽  
Weak Association ◽  
The Web

BACKGROUND Patients and their families are able to obtain information about palliative care from websites easily nowadays. However, there are concerns on the accuracy of information on the Web and how up to date it is. OBJECTIVE The objective of this study was to elucidate problematic points of medical information about palliative care obtained from websites, and to compare the quality of the information between Japanese and US websites. METHODS We searched Google Japan and Google USA for websites relating to palliative care. We then evaluated the top 50 websites from each search using the DISCERN and LIDA instruments. RESULTS We found that Japanese websites were given a lower evaluation of reliability than US websites. In 3 LIDA instrument subcategories—engagability (P<.001), currency (P=.001), and content production procedure (P<.001)—US websites scored significantly higher and had large effect sizes. CONCLUSIONS Our results suggest that Japanese websites have problems with the frequency with which they are updated, their update procedures and policies, and the scrutiny process the evidence must undergo. Additionally, there was a weak association between search ranking and reliability, and simultaneously we found that reliability could not be assessed by search ranking alone.

scholarly journals Quality of Web Information About Palliative Care on Websites from the United States and Japan: Comparative Evaluation Study

2018 ◽  
Vol 7 (1) ◽  
pp. e7 ◽  
Author(s):  
Kouichi Tanabe ◽  
Kaho Fujiwara ◽  
Hana Ogura ◽  
Hatsuna Yasuda ◽  
Nobuyuki Goto ◽  
...  
Keyword(s):  
United States ◽  
Palliative Care ◽  
Comparative Evaluation ◽  
Evaluation Study ◽  
The United States ◽  
Web Information

Palliative Care in End-Stage Neurological Disease

2018 ◽  
Author(s):  
Tobias Walbert ◽  
Joel Phillips
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Symptom Management ◽  
Neurological Diseases ◽  
The United States ◽  
Pain Syndromes ◽  
End Stage ◽  
Chronic Course

Neurological disorders are among the leading causes of morbidity and death worldwide. Although stroke is the third leading cause of death, after heart disease and cancer, in the United States, other neurological diseases have a more chronic course that leads to protracted disability, morbidity, and death. Unfortunately, for many of these disorders, such as Parkinson’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS), no cure is currently available. Patients suffer from dysarthria, dysphagia, muscle spasm, bladder and bowel difficulties, pain syndromes, and fatigue. Adequate symptom management and palliative care have the potential to maintain good quality of life for patients for as long as possible and ease the burden on both caregivers and patients. This chapter outlines the principles of clinical symptom management for some of the most important neurological diseases, specifically ALS, stroke, MS, and Parkinson’s disease.

Improving the Quality of Care across All Settings

2019 ◽  
pp. 573-605
Author(s):  
Marilyn Bookbinder ◽  
Romina Arceo ◽  
James T. McDaniel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
The United States ◽  
Healthcare Settings ◽  
National Priority ◽  
Hospice And Palliative Care ◽  
Eol Care ◽  
Clinician Assessment ◽  
Care Path

This chapter provides perspectives on quality-based initiatives in the United States across healthcare settings and populations and describes their impact on patient, professional, and system outcomes. The authors discuss the need for quality improvement (QI) at end of life, QI principles, and the models, methods, and tools most frequently used. Also described are areas of national priority for improving end-of-life (EOL) care. A care-path for the end of life is used to illustrate a QI effort and the FOCUS_PDSA method and to encourage use of specific tools for improving EOL care, including respiratory distress, and a clinician assessment of EOL care using The Joint Commission (TJC) tracer methodology. The authors review the linkages between QI and practice changes in hospitals and hospices that ultimately lead to improved EOL care and close with examples of how nurses are providing leadership in the field of quality hospice and palliative care.

High–Tech, Aggressive Palliative Care: In the Service of Quality of Life

1993 ◽  
Vol 9 (1) ◽  
pp. 37-41 ◽  
Author(s):  
David M. Dush
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Health Care ◽  
Palliative Care ◽  
Hospice Care ◽  
High Technology ◽  
The United States ◽  
High Tech ◽  
Hospice Movement

The hospice movement grew in part as a reaction to the perception that modern medical care had become too technological at the expense of being impersonal and insensitive to human psychological and spiritual concerns. In the United States, the institutionalization of hospice care under Medicare and other reimbursement systems has further established hospice as an alternative to high-technology, high-cost care. The present paper examines the question: What if hospice care becomes itself high-technology, aggressive, costly health care in order to remain true to its goal of maximizing quality of life? Implications for the goals and philosophical underpinnings of palliative care are discussed.

scholarly journals Mining Twitter to Assess the Determinants of Health Behavior towards Palliative Care in the United States

2020 ◽  
Author(s):  
Yunpeng Zhao ◽  
Hansi Zhang ◽  
Jinhai Huo ◽  
Yi Guo ◽  
Yonghui Wu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Behavioral Model ◽  
The United States ◽  
Integrated Behavioral Model ◽  
Fine Grained ◽  
Proven Efficacy ◽  
Adoption Research ◽  
Specialized Service ◽  
National Trends

AbstractPalliative care is a specialized service with proven efficacy in improving patients’ quality-of-life. Nevertheless, lack of awareness and misunderstanding limits its adoption. Research is urgently needed to understand the determinants (e.g., knowledge) related to its adoption. Traditionally, these determinants are measured with questionnaires. In this study, we explored Twitter to reveal these determinants guided by the Integrated Behavioral Model. A secondary goal is to assess the feasibility of extracting user demographics from Twitter data—a significant shortcoming in existing studies that limits our ability to explore more fine-grained research questions (e.g., gender difference). Thus, we collected, preprocessed, and geocoded palliative care-related tweets from 2013 to 2019 and then built classifiers to:1) categorize tweets into promotional vs. consumer discussions, and 2) extract user gender. Using topic modeling, we explored whether the topics learned from tweets are comparable to responses of palliative care-related questions in the Health Information National Trends Survey.

scholarly journals �A Phenomenal Person and Doctor�: Thank You Letters to Medical Care Providers (Preprint)

2016 ◽  
Author(s):  
Talya Miron-Shatz ◽  
Stefan Becker ◽  
Franklin Zaromb ◽  
Alexander Mertens ◽  
Avi Tsafrir
Keyword(s):  
Medical Care ◽  
The United States ◽  
Care Providers ◽  
Good Care ◽  
Patient Centered ◽  
Medical Facilities ◽  
Centered Care ◽  
Quality Of Medical Care ◽  
The Web

BACKGROUND Thank you letters to physicians and medical facilities are an untapped resource, providing an invaluable glimpse into what patients notice and appreciate in their care. OBJECTIVE The aim of this study was to analyze such thank you letters as posted on the Web by medical institutions to find what patients and families consider to be good care. In an age of patient-centered care, it is pivotal to see what metrics patients and families apply when assessing their care and whether they grasp specific versus general qualities in their care. METHODS Our exploratory inquiry covered 100 thank you letters posted on the Web by 26 medical facilities in the United States and the United Kingdom. We systematically coded and descriptively presented the aspects of care that patients and their families thanked doctors and medical facilities for. We relied on previous work outlining patient priorities and satisfaction (Anderson et al, 2007), to which we added a distinction between global and specific evaluations for each of the already existing categories with two additional categories: general praise and other, and several subcategories, such as treatment outcome, to the category of medical care. RESULTS In 73% of the letters (73/100), physicians were primarily thanked for their medical treatment. In 71% (71/100) of the letters, they were thanked for their personality and demeanor. In 52% cases (52/100), these two aspects were mentioned together, suggesting that from the perspective of patient as well as the family member, both are deemed necessary in positive evaluation of medical care. Only 8% (8/100) of the letters lacked reference to medical care, personality or demeanor, or communication. No statistically significant differences were observed in the number of letters that expressed gratitude for the personality or demeanor of medical care providers versus the quality of medical care (χ21, N=200=0.1, not statistically significant). Letters tended to express more specific praise for personality or demeanor, such as being supportive, understanding, humane and caring (48/71, 68%) but more general praise for medical care (χ21, N=424=63.9, P<.01). The most often mentioned specific quality of medical care were treatment outcomes (30/73, 41%), followed by technical competence (15/73, 21%) and treatment approach (14/73, 19%). A limitation of this inquiry is that we analyzed the letters that medical centers chose to post on the Web. These are not necessarily a representative sample of all thank you letters as are sent to health care institutions but are still indicative of what centers choose to showcase on the Web. CONCLUSIONS Physician demeanor and quality of interaction with patients are pivotal in how laymen perceive good care, no less so than medical care per se. This inquiry can inform care providers and medical curricula, leading to an improvement in the perceived quality of care.

scholarly journals Online Information About Periviable Birth: Quality Assessment (Preprint)

2018 ◽  
Author(s):  
Adriane F Haragan ◽  
Carly A Zuwiala ◽  
Katherine P Himes
Keyword(s):  
Medical Information ◽  
The United States ◽  
The Internet ◽  
Online Information ◽  
High Quality ◽  
Comfort Care ◽  
Treatment Choices ◽  
News Stories ◽  
Google Search

BACKGROUND Over 20,000 parents in the United States face the challenge of participating in decisions about whether to use life support for their infants born on the cusp of viability every year. Clinicians must help families grasp complex medical information about their baby’s immediate prognosis as well as the risk for significant long-term morbidity. Patients faced with this decision want supplemental information and frequently seek medical information on the Internet. Empirical evidence about the quality of websites is lacking. OBJECTIVE We sought to evaluate the quality of online information available about periviable birth and treatment options for infants born at the cusp of viability. METHODS We read a counseling script to 20 pregnant participants that included information typically provided by perinatal and neonatal providers when periviable birth is imminent. The women were then asked to list terms they would use to search the Internet if they wanted additional information. Using these search terms, two reviewers evaluated the content of websites obtained via a Google search. We used two metrics to assess the quality of websites. The first was the DISCERN instrument, a validated questionnaire designed to assess the quality of patient-targeted health information for treatment choices. The second metric was the Essential Content Tool (ECT), a tool designed to address key components of counseling around periviable birth as outlined by professional organizations. DISCERN scores were classified as low quality if scores were 2, fair quality if scores were 3, and high quality if scores were 4 or higher. Scores of 6 or higher on the ECT were considered high quality. Interreviewer agreement was assessed by calculated kappa statistic. RESULTS A total of 97 websites were reviewed. Over half (57/97, 59%) were for-profit sites, news stories, or personal blogs; 28% (27/97) were government or medical sites; and 13% (13/97) were nonprofit or advocacy sites. The majority of sites scored poorly in DISCERN questions designed to assess the reliability of information presented as well as data regarding treatment choices. Only 7% (7/97) of the websites were high quality as defined by the DISCERN tool. The majority of sites did not address the essential content defined by the ECT. Importantly, only 18% of websites (17/97) indicated that there are often a number of reasonable approaches to newborn care when faced with periviable birth. Agreement was strong, with kappa ranging from .72 to .91. CONCLUSIONS Most information about periviable birth found on the Internet using common search strategies is of low quality. News stories highlighting positive outcomes are disproportionately represented. Few websites discuss comfort care or how treatment decisions impact quality of life.

Benchmarking: A Tool for Excellence in Palliative Care

1992 ◽  
Vol 8 (4) ◽  
pp. 41-45 ◽  
Author(s):  
J. Alex Murray ◽  
Mary H. Murray
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Total Quality Management ◽  
Continuous Improvement ◽  
Well Being ◽  
The United States ◽  
Palliative Care Team ◽  
Care Providers ◽  
Total Quality

Quietly and without fanfare, total quality management (TQM) is being implemented in a branch of health care where quality of care has particular impact on the patient's comfort and well-being. Some palliative care providers, dedicated to improving the quality of life for the dying, have fulfilled all the criteria to be contenders for prestigious quality honors like the Baldrige Award in the United States and the Canada Award for Excellence. Their secret is simple: the patient defines quality, and the palliative care team acts on that definition. Benchmarking, a TQM tool, allows institutions and organizations to benefit from sharing their best processes, and keeps the TQM continuous improvement cycle on track.

Disparities among GU cancer patients referred to palliative care.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 114-114
Author(s):  
Saad Omar Atiq ◽  
James Helzberg ◽  
Nathan Hirshman ◽  
Zainab Atiq ◽  
Daniel J. George ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Palliative Care ◽  
Cancer Patients ◽  
The United States ◽  
Quality Data ◽  
Black Patients ◽  
Quality Of Life Scale

114 Background: The role of palliative care in genitourinary (GU) malignancies has been understudied. Despite representing nearly 25% of new cancer diagnoses, with over 350,000 new cases diagnosed each year, few GU patients have been included in palliative care trials under the theory that symptoms are less severe for GU patients than other solid tumors. Early involvement of palliative care services improves the patient care experience, decreases healthcare utilization, is associated with survival benefit, and results in improved quality of life and mood. To further elucidate the role of palliative care in oncology, we must study its utility in subsets of malignancy like GU cancers, as needs for patients may differ by malignancy type. Methods: A retrospective cross-sectional analysis of initial outpatient palliative care visits was performed using data from the Quality Data Collection Tool for Palliative Care (QDACT-PC) database from 2014-2020. QDACT-PC is a web-based, point-of-care registry used by physicians across the United States to track quality metrics associated with patient consultations. Data was collected and analyzed from patients' initial visits including pain scale, dyspnea scale, feeling of well-being (Quality of Life scale), fatigue scale, constipation scale, palliative performance status (PPS), and preference for resuscitation status. Scales for these variables were 0-10, with the exception of a scale of 0-100% for PPS. Patients less than 18 and greater than 90 years old were excluded. Chi-squared and Student’s t-tests were used to compare categorical and continuous variables, respectively. Results: 824 GU oncology patients (358 prostate cancer patients, 251 bladder cancer patients, 215 renal cancer patients) were compared against all patients with non-GU cancers (7807 patients). Notably, non-GU patients reported higher rates of fatigue (4.50 vs. 4.13, p = 0.0013) and dyspnea (1.63 vs. 1.11, p < 0.0001) than GU patients. GU malignancies had non-significant higher reported pain (3.73 vs. 3.60, p = 0.3109) and constipation (1.96 vs. 1.83, p = 0.2319) and lower PPS (4.95 vs. 4.96, p = 0.8555) and QOL (4.55 vs. 4.73, p = 0.0962). Preference for resuscitation at the time of referral was similar between the two groups (p = 0.6339). Only 16.5% of prostate cancer patients referred to palliative care in this database were black, while black patients are often estimated to represent 30% of new prostate cancer diagnoses each year. Conclusions: GU patients represent 9.54% of cancer patients seen by palliative care while the incidence is nearly 25%. Traditionally, GU patients were underrepresented in palliative care trials under the notion of less severe symptoms; however, this study demonstrates that GU patients have as severe symptoms as non-GU patients, highlighting a disparity in referral to palliative care. Furthermore, the lack of representation of black patients suggests potential inequity and warrants further investigation.

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