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Irene J Higginson - One of the best experts on this subject based on the ideXlab platform.
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the need for Palliative Care in ireland a population based estimate of Palliative Care using routine mortality data inclusive of nonmalignant conditions
Journal of Pain and Symptom Management, 2015Co-Authors: Pauline Kane, Irene J Higginson, Barbara A Daveson, Karen Ryan, Regina Mcquillan, Fliss E M MurtaghAbstract:Context. Over the history of Palliative Care provision in Ireland, services have predominantly provided Care to those with cancer. Previous estimates of Palliative Care need focused primarily on specialist Palliative Care and included only a limited number of nonmalignant diseases. Objectives. The primary aim of this study was to estimate the potential population with generalist and/or specialist Palliative Care needs in Ireland using routine mortality data inclusive of nonmalignant conditions. The secondary aim was to consider the quality of Irish data available for this population-based estimate. Methods. Irish routine mortality data (2007e2011) were analyzed for malignant and nonmalignant conditions recognized as potentially requiring Palliative Care input, using specific International Statistical Classification of Diseases and Related Health Problems-10th Revision codes. The method developed by Murtagh et al. was used to give a population-based Palliative Care needs estimate, encompassing generalist and specialist Palliative Care need. Results. During the period 2007e2011, there were 141,807 deaths. Eighty percent were from conditions recognized as having associated Palliative Care needs, with 41,253 (30%) deaths from cancer and 71,226 (50%) deaths from noncancer conditions. The majority of deaths, 81% (91,914), were among those $65 years. There was a 13.9% (901) increase in deaths of those $85 years. Deaths from dementia increased by 51.3%, with an increase in deaths from neurodegenerative disease (42.8%) and cancer (9.5%). Conclusion. Future Palliative Care policy decisions in Ireland must consider the rapidly aging Irish population with the accompanying increase in deaths from cancer, dementia, and neurodegenerative disease and associated Palliative Care need. New models of Palliative Care may be required to address this. J Pain Symptom Manage 2015;49:726e733. 2015 American
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integration of Palliative Care throughout hiv disease
Lancet Infectious Diseases, 2012Co-Authors: Victoria Simms, Irene J Higginson, Richard HardingAbstract:Summary People with HIV have a high burden of pain and physical, psychological, and social difficulties that can be managed effectively with Palliative Care. However, most individuals do not have access to this type of Care. Palliative Care is holistic patient-centred management of life-limiting progressive disorders and is recognised by WHO as an essential element of HIV Care, from diagnosis to end of life. Historically, Palliative Care and HIV Care were linked closely, but misconceptions divide the two disciplines today. Palliative Care can augment patients' outcomes and boost adherence to antiretroviral treatments and life expectancy. In much of the world, services providing Palliative Care are isolated, and most individuals in need have no access to this Care. The commitment to provide Palliative Care for all people with HIV can be fulfilled if clinical workers are trained in this therapeutic approach and if Care is delivered at community level, with support for family Caregivers.
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development and validation of a core outcome measure for Palliative Care the Palliative Care outcome scale Palliative Care core audit project advisory group
BMJ Quality & Safety, 1999Co-Authors: Julie Hearn, Irene J HigginsonAbstract:OBJECTIVES: To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist Palliative Care settings throughout the UK. DESIGN: A systematic literature review of measures appropriate for use in Palliative Care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to Palliative Care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their Care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. SETTING: Eight centres in England and Scotland providing Palliative Care, including inpatient Care, outpatient Care, day Care, home Care, and primary Care. PATIENTS: A total of 450 patients entered Care during the study period. Staff collected data routinely on patients in Care long enough to be assessed (n = 337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. MAIN MEASURES: The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. RESULTS: The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbach's alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. CONCLUSION: The POS has acceptable validity and reliability. It can be used to assess prospectively Palliative Care for patients with advanced cancer.
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development and validation of a core outcome measure for Palliative Care the Palliative Care outcome scale Palliative Care core audit project advisory group
BMJ Quality & Safety, 1999Co-Authors: Julie Hearn, Irene J HigginsonAbstract:OBJECTIVES: To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist Palliative Care settings throughout the UK. DESIGN: A systematic literature review of measures appropriate for use in Palliative Care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to Palliative Care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their Care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. SETTING: Eight centres in England and Scotland providing Palliative Care, including inpatient Care, outpatient Care, day Care, home Care, and primary Care. PATIENTS: A total of 450 patients entered Care during the study period. Staff collected data routinely on patients in Care long enough to be assessed (n = 337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. MAIN MEASURES: The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. RESULTS: The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbach's alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. CONCLUSION: The POS has acceptable validity and reliability. It can be used to assess prospectively Palliative Care for patients with advanced cancer.
Amy P Abernethy - One of the best experts on this subject based on the ideXlab platform.
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community based Palliative Care the natural evolution for Palliative Care delivery in the u s
Journal of Pain and Symptom Management, 2013Co-Authors: Arif H Kamal, Amy P Abernethy, David C Currow, Christine S Ritchie, Janet BullAbstract:Abstract Palliative Care in the U.S. has evolved from a system primarily reliant on community-based hospices to a combined model that includes inpatient services at most large hospitals. However, these two dominant approaches leave most patients needing Palliative Care—those at home (including nursing homes) but not yet ready for hospice—unable to access the positive impacts of the Palliative Care approach. We propose a community-based Palliative Care (CPC) model that spans the array of inpatient and outpatient settings in which Palliative Care is provided and links seamlessly to inpatient Care; likewise, it would span the full trajectory of advanced illness rather than focusing on the period just before death. Examples of CPC programs are developing organically across the U.S. As our understanding of CPC expands, standardization is needed to ensure replicability, consistency, and the ability to relate intervention models to outcomes. A growing body of literature examining outpatient Palliative Care supports the role of CPC in improving outcomes, including reduction in symptom burden, improved quality of life, increased survival, better satisfaction with Care, and reduced health Care resource utilization. Furthermore the examination of how to operationalize CPC is needed before widespread implementation can be realized. This article describes the key characteristics of CPC, highlighting its role in longitudinal Care across patient transitions. Distinguishing features include consistent Care across the disease trajectory independent of diagnosis and prognosis; inclusion of inpatient, outpatient, long-term Care, and at-home Care delivery; collaboration with other medical disciplines, nursing, and allied health; and full integration into the health Care system (rather than parallel delivery).
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generalist plus specialist Palliative Care creating a more sustainable model
The New England Journal of Medicine, 2013Co-Authors: Timothy E Quill, Amy P AbernethyAbstract:The U.S. Palliative Care model adds another layer of specialized Care to a complex, expensive health Care environment, and there are too few Palliative Care specialists to meet demand. Distinguishing primary from specialist Palliative Care would improve quality of Care.
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a framework for generalizability in Palliative Care
Journal of Pain and Symptom Management, 2009Co-Authors: Amy P Abernethy, David C Currow, Jane L Wheeler, Paul Glare, Stein KaasaAbstract:Palliative medicine has only recently joined the ranks of evidence-based medical subspecialties. Palliative medicine is a rapidly evolving field, which is quickly moving to redress its historical paucity of high-quality research evidence. This burgeoning evidence base can help support the application of evidence-based principles in Palliative and hospice clinical Care and service delivery. New knowledge is generally taken into practice relatively slowly by established practitioners. At present, the translation of evidence into Palliative and hospice Care clinical practice lags behind emerging research evidence in Palliative Care at even greater rates for three critical reasons: 1) the application of research results to specific clinical subpopulations is complicated by the heterogeneity of Palliative Care study subpopulations and by the lack of a recognized schema for describing populations or services; 2) definitional issues in service provision are, at best, confusing; and 3) fundamental research concepts (e.g., external validity, effect size, generalizability, applicability) are difficult to apply meaningfully in Palliative Care. This article provides a suggested framework for classifying Palliative Care research subpopulations and the clinical subpopulations to which the research findings are being applied to improve the ability of clinicians, health planners, and funders to interpret and apply Palliative Care research in real-world settings. The framework has five domains: patients and Caregivers; health professionals; service issues; health and social policy; and research.
Julie Hearn - One of the best experts on this subject based on the ideXlab platform.
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development and validation of a core outcome measure for Palliative Care the Palliative Care outcome scale Palliative Care core audit project advisory group
BMJ Quality & Safety, 1999Co-Authors: Julie Hearn, Irene J HigginsonAbstract:OBJECTIVES: To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist Palliative Care settings throughout the UK. DESIGN: A systematic literature review of measures appropriate for use in Palliative Care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to Palliative Care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their Care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. SETTING: Eight centres in England and Scotland providing Palliative Care, including inpatient Care, outpatient Care, day Care, home Care, and primary Care. PATIENTS: A total of 450 patients entered Care during the study period. Staff collected data routinely on patients in Care long enough to be assessed (n = 337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. MAIN MEASURES: The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. RESULTS: The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbach's alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. CONCLUSION: The POS has acceptable validity and reliability. It can be used to assess prospectively Palliative Care for patients with advanced cancer.
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development and validation of a core outcome measure for Palliative Care the Palliative Care outcome scale Palliative Care core audit project advisory group
BMJ Quality & Safety, 1999Co-Authors: Julie Hearn, Irene J HigginsonAbstract:OBJECTIVES: To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist Palliative Care settings throughout the UK. DESIGN: A systematic literature review of measures appropriate for use in Palliative Care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to Palliative Care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their Care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. SETTING: Eight centres in England and Scotland providing Palliative Care, including inpatient Care, outpatient Care, day Care, home Care, and primary Care. PATIENTS: A total of 450 patients entered Care during the study period. Staff collected data routinely on patients in Care long enough to be assessed (n = 337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. MAIN MEASURES: The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. RESULTS: The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbach's alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. CONCLUSION: The POS has acceptable validity and reliability. It can be used to assess prospectively Palliative Care for patients with advanced cancer.
Diane E Meier - One of the best experts on this subject based on the ideXlab platform.
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a national strategy for Palliative Care
Health Affairs, 2017Co-Authors: Diane E Meier, Anthony L Back, Amy Berman, Susan D Block, Janet M Corrigan, Sean R MorrisonAbstract:In 2014 the World Health Organization called for Palliative Care to be integrated as an essential element of the health Care continuum. Yet in 2017 US Palliative Care services are found largely in hospitals, and hospice Care, which is delivered primarily in the home, is limited to people who are dying soon. The majority of Americans with a serious illness are not dying; are living at home, in assisted living facilities, or in nursing homes; and have limited access to Palliative Care. Most health Care providers lack knowledge about and skills in pain and symptom management, communication, and Care coordination, and both the public and health professionals are only vaguely aware of the benefits of Palliative Care and how and when to access it. The lack of policy supports for Palliative Care contributes to preventable suffering and low-value Care. In this article we outline the need for a national Palliative Care strategy to ensure reliable access to high-quality Palliative Care for Americans with serious me...
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identifying patients in need of a Palliative Care assessment in the hospital settinga consensus report from the center to advance Palliative Care
Journal of Palliative Medicine, 2011Co-Authors: David E Weissman, Diane E MeierAbstract:Workforce shortages, late referrals, and Palliative Care program resource constraints present significant barriers to meeting the needs of hospitalized patients facing serious illnesses. The Center to Advance Palliative Care convened a consensus panel to select criteria by which patients at high risk for unmet Palliative Care needs can be identified in advance for a Palliative Care screening assessment. The consensus panel developed primary and secondary criteria for two checklists-one to use for screening at the time of admission and one for daily patient rounds. The consensus panel believes that by implementing a checklist approach to screening patients for unmet Palliative Care needs, combined with educational initiatives and other system-change work, hospital staff engaged in day-to-day patient Care can identify a majority of such needs, reserving specialty Palliative Care services for more complex problems.
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center to advance Palliative Care Palliative Care clinical Care and customer satisfaction metrics consensus recommendations
Journal of Palliative Medicine, 2010Co-Authors: David E Weissman, Sean R Morrison, Diane E MeierAbstract:Abstract Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of Palliative Care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice Palliative Care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of Care; support to patient/family Caregivers; and management of transitions across Care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family ...
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cost savings associated with us hospital Palliative Care consultation programs
JAMA Internal Medicine, 2008Co-Authors: Sean R Morrison, Joan D Penrod, Brian J Cassel, Melissa Caustellenbogen, Lynn Spragens, Diane E MeierAbstract:Background Hospital Palliative Care consultation teams have been shown to improve Care for adults with serious illness. This study examined the effect of Palliative Care teams on hospital costs. Methods We analyzed administrative data from 8 hospitals with established Palliative Care programs for the years 2002 through 2004. Patients receiving Palliative Care were matched by propensity score to patients receiving usual Care. Generalized linear models were estimated for costs per admission and per hospital day. Results Of the 2966 Palliative Care patients who were discharged alive, 2630 Palliative Care patients (89%) were matched to 18 427 usual Care patients, and of the 2388 Palliative Care patients who died, 2278 (95%) were matched to 2124 usual Care patients. The Palliative Care patients who were discharged alive had an adjusted net savings of $1696 in direct costs per admission ( P = .004) and $279 in direct costs per day ( P P = .003) and $374 in direct costs per day ( P Conclusion Hospital Palliative Care consultation teams are associated with significant hospital cost savings.
Ashley F Haggerty - One of the best experts on this subject based on the ideXlab platform.
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sources of Palliative Care knowledge among patients with advanced or metastatic gynecologic cancer
Journal of Pain and Symptom Management, 2021Co-Authors: Katherine Hickscourant, Mark A Morgan, Ashley Graul, Robert L Giuntoli, Lainie P Martin, Ashley F HaggertyAbstract:Abstract Context A minority of patients with advanced or metastatic gynecologic cancer utilize Palliative Care and lack of knowledge may be a barrier to receiving Palliative Care services. Objectives To identify sources used by patients with advanced or metastatic gynecologic cancer to learn about Palliative Care and evaluate for differences in knowledge about Palliative Care and Palliative Care utilization by knowledge source. Methods Patients with gynecologic cancer receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about Palliative Care. Medical chart review was conducted. Results Of the 111 women surveyed, 70 had heard of Palliative Care (63%). Sixty-eight specified from where they learned of Palliative Care: cancer Care (n = 28; 41.2%), word of mouth (n = 26; 38.2%), work (n = 6; 8.8%), self-education (n = 4; 5.9%), personal experience (n = 2; 2.9%), or do not know (n = 2; 2.9%). Knowledge about Palliative Care (P = 0.35) and Palliative Care utilization (P = 0.81) did not differ by awareness of Palliative Care. Conclusion Most women receiving treatment for advanced gynecologic cancer have heard of Palliative Care from sources other than their cancer Care providers. Knowledge about Palliative Care and source of knowledge about Palliative Care were not associated with Palliative Care utilization. Awareness of Palliative Care and Palliative Care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.
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effect of patient education on Palliative Care knowledge and acceptability of outpatient Palliative Care services among gynecologic oncology patients a randomized controlled trial
Gynecologic Oncology, 2020Co-Authors: A Graul, Ashley F Haggerty, Carolyn Stickley, Pallavi Kumar, Knashawn H Morales, Hillary R Bogner, Robert A Burger, Mark A MorganAbstract:Abstract Objectives A randomized control trial (RCT) to estimate the effect of an interventional video on improving Palliative Care knowledge, acceptability and attendance to outpatient services in gynecologic oncology patients. Methods Women receiving treatment for gynecologic malignancy recruited at an academic tertiary Care center were randomized to: Palliative Care educational video or non-directive cancer center video. The primary outcome was referral to Palliative Care. Function and knowledge were assessed using the Functional Assessment of Cancer Therapy and the Palliative Care Knowledge Scale. Data analyses were performed using t-tests, Wilcoxon rank sum or Fisher's exact tests with significance level of α = 0.05. Results 111 women were enrolled. Demographic characteristics were equally distributed between groups with respect to age, race, cancer, and stage. There was no statistical difference in knowledge scores or in referral to Palliative Care between the patients that watched the educational versus control video (29% vs. 27%; p = .79). Secondary analysis showed a statistically significant increase in utilization of Palliative Care services compared to historic institutional data (8.8% to 31.5%; p ≤.001). Further, those referred had significantly worse baseline functional scores. Conclusions Use of a Palliative Care educational video did not increase knowledge or acceptability of Palliative services within this RCT. However, the rate of patients referred to Palliative Care tripled compared to historic rates. Further studies should investigate whether discussion regarding Palliative Care services alone may increase desire for referral, and if use of Fact-G scores may identify patients in greatest need of services.
