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Research Results
"I'm a data kind of guy. I've bookmarked this page because its links help me stay up-to-date with the research findings. From here I can access qualitative and quantitative studies. There are also links to assessment tools and reports on demonstration projects I can adapt to our purposes."
Evidence-based practice is the gold standard in health care, and, at Palliative CareCenter and Hospice, we believe that research is essential to quality end-of-life care. To assist you in staying current, we have included links to a great variety of research data.
- Qualitative national data
- Quantitative national data
- Demonstration projects and other applied research
- Policy studies
- Research tools
Qualitative national data
Living and Healing During Life-Threatening Illness
This 1997 nationwide qualitative study involved focus groups in 11 cites, comparing the experiences of patients, family members and health care providers.This study was conducted by the Supportive Care Coalition, a group of hospitals in the catholic health system dedicated to system change in end-of-life care.
Quantitative national data
EDELEDATA.ORG
(Epidemiology of Dying and End-of-Life Experience) This national database of research results is searchable by topic, key word, state or a frequently asked question. It includes links to websites where reports are available and visuals concerning charts, graphs, etc. Access is free of charge, but viewers must register. Features include email alerts when new entries occur in user-selected categories. Information covers the gamut from utilization statistics to decedent and community characteristics, and quality outcomes. Funded initially by NHPCO and the Carolinas Center for Hospice and End-of-Life Care, the majority of data focuses on the southeastern U.S. however national data are also available and the database is continually expanding.
Evidence-based Caregiver Interventions
Former First Lady Rosalynn Carter has long been an advocate for family caregivers. In an effort to bring science into practice, the Rosalynn Carter Institute has created a database of caregiver interventions that have undergone rigorous evaluations. Viewers may search by category (e.g., dementia, cancer, mental health) and by type of resource (intervention study, materials available, training available).
Family Caregiver Alliance
This consumer support group provides access to factsheets on specific caregiving issues, as well as demographic studies and research on policy (e.g., National Consensus Report on Caregiver Assessment and state-by-state legislative analysis regarding caregiver support).
Means to a Better End
This 2002, state-by-state report looks at quality indicators for end-of-life care including: location of death, pain management, advance directives, hospice utilization, and palliative care services and training.
National Alliance for Caregiving
This coalition is comprised of national organizations focusing on issues of family caregiving, including non-profits, governmental agencies, professional associations, and private sector corporations. The Alliance conducts research and policy analyses to advocate for improved quality of life for families caring for a dependent relative. Their studies are national in scope and rigorous in methodology. Thus, they are frequently quoted in publications pertaining to family caregiving and are often called upon to testify to Congress.
Demonstration projects and other applied research
Innovations in End-of-Life Care
This online, international journal was published from 1999-2003 as part of the Robert Wood Johnson end-of-life initiative. Archival issues remain available, with a searchable database. Topics include innovations in pain management, advance care planning, hospice-nursing home partnerships, bereavement, palliative care, useful clinical tools, and quality measures, just to name a few.
Promoting Excellence in End of Life Care
This website provides summaries of over 20 demonstration projects funded by the Robert Wood Johnson Foundation specifically for their potential to improve end-of-life care in a variety of settings. Included on the website are descriptions of each project, research tools used, and final reports.
State Initiatives in End-of-Life Care
Published by the Center for Practical Bioethics, this series chronicled key policy issues and promising practices from 1998 to 2006. In particular, the last issue sought the opinions of 35 influential leaders in the field regarding needed reforms in the payment methods and the delivery of care.
Supportive Care Coalition: Pursuing Excellence in Palliative Care
Long an advocate for institutional change, this coalition of 16 Catholic health care systems has invested in significant research projects, including nationwide studies learning about the needs of patients and families, and then the development and evaluation of demonstration projects designed to address these needs. Their focus has been on affordable, reproducible innovations. Thus they share the results of their applied research on their website, including assessment/evaluation tools and research results (both found in Tools for Excellence), and articles on best practices. Excellent one-stop resource for learning about the nuts and bolts of innovations in hospice and palliative care.
Policy studies
Family Caregiver Alliance
This consumer support group provides access to factsheets on specific caregiving issues, as well as demographic studies and research on policy (e.g., National Consensus Report on Caregiver Assessment and state-by-state legislative analysis regarding caregiver support).
National Alliance for Caregiving
This coalition is comprised of national organizations focusing on issues of family caregiving, including non-profits, governmental agencies, professional associations and private sector corporations. The Alliance conducts research and policy analyses to advocate for improved quality of life for families caring for a dependent relative. Their studies are national in scope and rigorous in methodology. Thus, they are frequently quoted in publications pertaining to family caregiving and are often called upon to testify to Congress.
NIH State-of-the-Science Report on End-of-life Care (2004)
This consensus report looks at outcome trends and suggests directions for future research. A primary difficulty in end-of-life care is the fact that "end-of-life" is defined more by regulatory issues than by empirical data.Specific challenges include the 6 month prognosis requirement for Medicare, lack of continuity and shared information across care settings, disparities of care among subpopulations, etc. Download the report from their website.
Report to Congress: Increasing the Value of Medicare
This 2006 report by the Medicare Payment Advisory Commission details current statistics and trends regarding Medicare, including a chapter dedicated to hospice utilization. (For even greater statistical detail, refer to "A Data Book: Healthcare Spending and the Medicare Program," also available in the Reports section of this website.) You can find these reports by searching reports by year and selecting 2006.
State Initiatives in End-of-Life Care
Published by the Center for Practical Bioethics, this series chronicled key policy issues and promising practices from 1998 to 2006. In particular, the last issue sought the opinions of 35 influential leaders in the field regarding needed reforms in the payment methods and the delivery of care.
University of Wisconsin Pain and Policy Studies Group
The purpose of this website is to facilitate access to information regarding pain relief and public policy. Resources include news alerts, a bibliography for those new to the issues, monographs and conference presentations, a database of statutes and regulations, and information on other countries' approaches to pain policy.
Research tools
Medical Algorithms
Developed by the non-profit Institute for Algorithmic Medicine, this website displays the results of the Medical Algorithms Project. It includes a search engine for locating over 10,000 algorithms. Some have web-based forms, others offer downloadable spreadsheets. Performance measures include quality of life, social support, symptom burden, etc. Useful for researchers and facilities interested in applying evidence-based processes, or in evaluating their work.
Promoting Excellence in End of Life Care
This websiteprovides assessment tools for professionals that were used in numerous demonstration projects. Instruments are available in the areas of clinical care, evaluation, education, organization, and research.
Toolkit of Instruments to Measure End-of-Life Care
Developed as a result of several gatherings in the late 1990's, this toolkit represents recommendations of leaders in the field for clinically meaningful, patient- and family-centered measures. The website includes suggested instruments and annotated bibliographies in numerous domains: quality of life; pain and other physical symptoms; emotional/cognitive symptoms; functional status; survival time/prognostication; advance care planning; continuity of care; spirituality; grief and bereavement; and caregiver well-being.
Please Note: Palliative CareCenter and Hospice does not specifically endorse the activities of these organizations, but offers their information as a sample of the kinds of materials and services that are available.