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ABSTRACT
Education in Palliative and End-of-life Care for Long-Term Care (EPEC-LTC)

Principal Investigator: Celia M. Berdes, M.S.P.H., Ph.D.

 

The proposed project reflects an overall goal of Northwestern University’s Buehler Center on Aging: to bring the benefits of person-centered/palliative care to elders with chronic conditions. First, the project will develop and pilot test a method to assess the need for person-centered/palliative care. The assessment will be pilot tested in collaboration with Presbyterian Homes in Evanston, Illinois. Second, the results of the needs assessment will be used to guide the adaptation of an educational intervention (a palliative and end-of-life care curriculum) for use in long-term care facilities. Based on the findings of the assessment, the project will adapt—from existing modules from the Education in Palliative and End-of-life Care (EPEC) Curriculum or its Geriatrics adaptation— at least five high-impact educational modules on person-centered/palliative care in long-term care, thus creating EPEC-Long-Term Care. The proposed project is Phase I of an envisioned three-phase project. Phases II and III will demonstrate the educational modules, evaluate the impact of the educational intervention by repeating the needs assessment, and organize a consortium of long-term care facilities aimed at further dissemination and evaluation of EPEC-LTC.

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ABSTRACT
IRT-Based PRO Management for Oncology Practice

Principal Investigator: Chih-Hung Chang, Ph.D.

 

Despite the abundant research in patient-reported outcomes (PRO) for cancer, PRO data are not routinely collected and utilized at oncology clinics due to technological and logistical constraints and lack of knowledge in interpreting, monitoring and responding to such data.  Our long-term goal is to integrate patient-reported outcomes information, clinically relevant information, evidence-based medicine, and technology and methodology to provide on-demand and individualized clinical guidelines and treatment decision trees to improve cancer patients’ care.

Our Phase I project aims are to (1) conduct focus groups, interviews and site visits to collect system functional and operational requirements; (2) perform literature reviews to assess scientific and technical feasibility; (3) create system design specifications; (4) develop and pilot test a prototype system; and (5) construct the initial PRO item bank focusing on breast cancer.

The proposed PRO management system is designed for both oncology clinicians and patients.  The novelties are in the integration of well-developed psychometrics and advanced information technologies for daily practice and research application in clinical settings.  With exisiting and increasing numbers of cancer patients in the U.S., the need for such an integrated system that we propose to develop is substantial.

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DESCRIPTION (provided by applicant): The recognition of family caregivers and the consequence of caregiving for Alzheimer's disease (AD) patients have resulted in some measurement tools for caregiver burden and fulfillment. The breadth of the caregiving experience and burden demands reliable, comprehensive and validated measurement tools suited to the complicated and dynamic patient-caregiver relationships. Only then can they be reliably assessed and so that caregivers be appropriately assisted in their provision of care and protected from complications of excess stress. This type of tool can be useful to assess a caregiver's situation by clinicians and others in early detection efforts to screen for caregivers at risk and to direct proper and timely interventions. The proposed project will utilize modern advanced psychometric methods, i.e., item response theory (IRT), to evaluate the core battery of measures used in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) initiative. A primary strength of this National Institute on Aging (NIA) and the National Institute on Nursing Research (NINR) sponsored initiative is the large (N = 1,222) racially and ethnically diverse sample of caregivers (non-Hispanic White, non-Hispanic Black, and Hispanic). Given the limited availability of caregiver health assessment tools that are sensitive to the needs of linguistically, culturally, and educationally diverse caregivers, this proposed project will focus on language and culture aspects. Our two specific aims are: 1) to test the psychometric properties of the REACH core battery of measures and to examine the effect of language and culture on item response; and 2) to compare the measurement equivalence of the socio-demographic and clinical groups of caregivers on the core battery of measures in terms of other psychometric characteristics, and to explore the sensitivity to clinical change over time. In summary, the purpose of this secondary data analysis project is twofold. The first purpose is to perform IRT-based item analyses of the REACH core battery of instruments in order to identify items that show measurement bias. Knowledge about such DIP impacts will provide a basis for more effective use of the instruments in culturally diverse AD caregiver populations. The second purpose is to examine the effects on scale-level statistical properties of maintaining or removing items with significant differential item functioning (DIP). The completion of this study may provide useful data, on the basis of a large population-based sample on various scale-level measures. '

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:

There are no thesaurus terms on file for this project.

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2007
Department:	MEDICINE
Project Start:	15-SEP-2007
Project End:	31-AUG-2008
ICD:	NATIONAL INSTITUTE ON AGING
IRG:	NSAA

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ABSTRACT
Computerized Adaptive Quality of Life Assessment in Veterans with COPD: A Feasibility Study

Principal Investigator: Chih-Hung Chang, Ph.D.

 

Chronic obstructive pulmonary disease (COPD) is costly, in both human and economic terms. Currently, there is no cure for COPD. As the disease progresses, patients experience increasing deterioration of their QOL. If QOL data are to be an integral part of COPD care in Veterans Administration (VA) Hospitals, they must be easy to gather, clinically meaningful, psychometrically sound, easily interpretable, and readily available.

Although many measures to assess QOL are available, they are not routinely used in clinical practice due to logistical constraints. Computer technologies and modern psychometric methods can aid in the collection, processing and interpretation of large quantities of QOL data in real-time to provide an efficient vehicle for the incorporation of QOL data into a busy clinical setting.

We propose to evaluate one proven touch-screen technology to collect QOL data from veterans with COPD. Accurate and timely QOL assessment in this patient population may provide new insight into disease or treatment problems that may have gone undetected simply because many studies have not been able to accommodate their special needs.
This proposal aims to create a system that will: 1) eliminate labor-intensive interviewer-administered QOL questionnaires; and 2) establish efficient methods to capture reliable QOL data at a time and place convenient for the patient.

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DESCRIPTION (provided by applicant): A new interdisciplinary network, the "Novel Pain Assessment and Intervention Network (NoPAIN)" will be established to explore a measurement-to-management system for geriatric pain with the long-term goal of generating a new discipline of Clinical Infometrics. Clinical Infometrics as we envision it is a synthesis of patient assessment data with computer technology, information theory, and measurement science to improve the connection between research findings / guidelines with clinical practices. We have chosen geriatric pain because it is a complex and multidimensional construct that has a critical mass of assessment instruments that need refining and has known gaps between recommended and actual practices. Because of demographic changes, geriatric pain management demands particular attention; its successes in improvement will also likely be applicable to other areas. This project has three specific aims: 1) To bring together experts in bio-informatics, clinical and nursing research, and the social sciences to discuss the issue of pain among older patients; 2) To design a new interdisciplinary method that will characterize how Clinical Infometrics can work. This prototype will be an integrated clinical decision support system in pain (CDSS-Pain); and 3) To produce grant proposals to test and implement CDSS-Pain. The broad long-term objectives of the NoPAIN Network are: 1) To develop reliable and valid measures using state-of-the-art measurement models; 2) To develop predictive models of treatment outcomes by using sophisticated statistical techniques on large databases; 3) To develop tailored approaches using medical informatics for the integration of clinical guidelines and patient-reported information to facilitate informed patient-physician decision making; and 4) To develop and refine biobehavioral techniques for improving patient adherence to pain management and clinical adherence to guidelines. Although the focus of this network will be to explore the infrastructure and analytic methods of a CDSS-Pain, in the future it will also delve into other topics of interdisciplinary health research. Successful development of Clinical Infometrics will assist in translating therapies from the bench to the bedside for geriatric pain, and the methodologies that flow from it will have potential applications to other conditions and populations.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
computer assisted medical decision making, geriatric medicine, measurement, method development, pain, patient care management
aging, analgesia, behavioral /social science, bioinformatics, clinical research, computer, computer assisted patient care, diagnosis design /evaluation, geriatric nursing, information theory, interdisciplinary collaboration, nursing research, psychobiology, therapy compliance

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2004
Department:	MEDICINE
Project Start:	27-SEP-2004
Project End:	31-JUL-2006
ICD:	NATIONAL CANCER INSTITUTE
IRG:	ZCA1

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DESCRIPTION (provided by applicant): Background: Essential to high-quality palliative care assessment and management is the availability of psychometrically-sound and clinically-relevant screening, diagnosis, and outcome evaluation tools that will enable healthcare providers to attain optimal patient evaluation, prognosis, treatment selection, patient satisfaction, and quality of life improvement. We propose to develop a patient-centered, model-driven, evidence-based system called the System for Interactive Assessment and Management in Palliative Care (SIAM-PC) using innovative methodologies and technologies. Aims: Our four distinct but related specific aims are to: 1) identify and refine the domains of palliative care, using existing theoretical frameworks as a guide; 2) compile the items for multidimensional palliative care item bank, drawing from existing measures and supplementing with newly written items; 3) empirically construct a palliative care item bank using item response theory (IRT); and 4) pilot test a computerized adaptive testing (CAT) platform to dynamically administer palliative care assessment in clinical settings. Methods: First, we will identify and refine the key domains of palliative care, guided by existing frameworks, from in-depth individual interviews (n=50; 20 patients, 20 family members and 10 clinicians) and literature review (Aim 1). Second, we will compile items pertinent to these domains from existing measures, writing new items for un-covered domains (Aim 2). Third, we will test these items by collecting and analyzing data from patients (n=200) receiving palliative (Aim 3). Finally, we will pilot test the CAT system (n=40) in clinical practice (Aim 4). Outcomes: At the end of this R21 project, we expect that (1) the conceptual model of palliative care measurement can be improved; (2) the initial sets of palliative care domains/items can be constructed; (3) items displaying DIF can be identified and revised; and (4) the CAT prototype will demonstrate how the system should be implemented in clinical settings. Palliative care is a major public health concern. There is significant consensus and ample evidence in the literature to call for a comprehensive, interdisciplinary approach to address this concern. This comprehensive assessment and care is demanding in that it depends upon multiple sources of information, and yet the practicalities of real-life care depend upon concise information. Our proposed study is to create valid methods to connect comprehensive assessment with concise information in patient assessment and care.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
family, model, quality of life
base, behavior, diagnosis, face, health, interview, lead, literature survey, measurement, motivation, pain, prevention, prognosis, public health, satisfaction, sound
clinical research

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2007
Department:	BUEHLER CENTER ON AGING
Project Start:	20-JUL-2007
Project End:	31-MAY-2009
ICD:	NATIONAL INSTITUTE OF NURSING RESEARCH
IRG:	NSAA

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DESCRIPTION (provided by applicant): We propose to develop a model-driven, evidence-based pain item bank for use in pain assessment that is specific to geriatric oncology (gero-oncology) patients. This will build on our Novel Pain Assessment and Intervention Network (NoPAIN) project (Chang, PI, 1R21CA113191-01), and continue its Clinical Infometrics approach. This proposed study is designed in response to PA-03-152 (Biobehavioral Pain Research) to "refine existing techniques for measuring pain and develop new techniques that are disease- and outcome- specific for different populations." We have chosen the condition of pain in this population because: pain is a complex multidimensional experience; a critical mass of pain instruments now exist and there is an urgent need to refine and implement them; and pain management in cancer among older adults is a pressing issue given societal demographics. We also aim to construct a computerized adaptive testing platform for this item bank that: 1) can reliably measure the multidimensional pain experience of heterogeneous cancer patients; and 2) is sensitive to change so that it can assess the effectiveness of treatments over time. Our four distinct but related specific aims are: 1) To identify and refine the domains of pain assessment for a gero-oncology population, using existing theoretical frameworks in biopsychosocial medicine and palliative care as a guide; 2) To compile the items for a multidimensional pain item bank, drawing from existing pain questionnaires and supplementing with newly written items; 3) To develop empirically a pain item bank applicable to a gero-oncology population; and 4) To pilot test a computerized adaptive testing (CAT) platform to administer individualized pain assessments in clinical settings. At the end of this R21 project, we expect that (1) the conceptual model of the gero-oncology pain measurement can be improved; (2) the initial sets of pain items can be constructed; (3) items displaying differential item functioning (DIF) can be identified and revised; and (4) the CAT prototype will demonstrate how the system should be implemented and tested in clinical settings.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
oncology, pain
base, conditioning, experience, geriatrics, measurement, medicine, model, motivation, neoplasm /cancer, questionnaire
clinical research

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2007
Department:	MEDICINE
Project Start:	01-FEB-2007
Project End:	30-NOV-2008
ICD:	NATIONAL CANCER INSTITUTE
IRG:	BCHI

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ABSTRACT
The Business of Employing People with Diablilities: Three Case Studies
Principal Investigator: Linda L. Emanuel, M.D., Ph.D.

 

The retirement of the baby-boom generation presents society with many challenges, including projected labor supply shortages in certain professions. Recently, emphasis has been placed on examining ways to harness the productive capability of those populations that historically have been excluded or underemployed. The unemployment rate among people with disabilities hovers somewhere around 70%.  There are many reasons for this; however, one of the most prominent is the belief that there are significant economic costs to employing people with disabilities, without requisite benefits in terms of productivity. Research in the economics of disability and employment has focused on analyses of income support, health insurance, and accommodations at the level of the labor market. There is a gap in academic research on decision-making processes of employers of people with disabilities. There is an
equivalent lack of integration of disability issues in business case studies.

Through analysis of in-depth interviews and documentary evidence of three firms (Sears, Roebuck and Company, Aon Corporation, and the East Bank Club), this project will delineate strategies that work for successful employment of people with disabilities.  The particular focus is on managing the economic costs and benefits of hiring disabled workers. Three business cases of firms and an academic multi-case study report will be produced. The business cases will focus on the strategies for hiring and maintaining people with disabilities. These will be put to use in the classroom at the Kellogg School of Management and other business schools to integrate issues of disability and employment into the curriculum. The multi-case analysis will serve as a more academic analysis of cases, examining the strategies of these firms, comparing them and generating themes and theories about which employment strategies work best and why. These cases and academic analysis will lay the foundation for the education of future business leaders and generation of theories for testing with alternative research designs.

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Managing patients' risk for injury while they are receiving care in healthcare organizations is a national priority in the U.S. While this has been true for at least five years – ever since the National Academy of Sciences' Institute of Medicine (IOM) reported that medical errors were the 4th to 8th largest cause of preventable death -- not much progress has been made preventing them.

The difficulty is that large gaps exist between what should be happening to train medical team members in patient safety in their healthcare environments and what actually is. In a February 2005 meeting, prominent patient safety leaders met as the Governing Council for the Patient Safety Education Project to discuss two of these gaps. First, while high quality patient safety curricular materials have been produced by a variety of key, highly regarded organizations, no consensus currently exists about what a general curriculum for the field of patient safety should be in the U.S. Second, huge numbers of various professional and paraprofessional medical team members have not been trained in the basics of safety science, high reliability engineering, or patient-centered care, so clearly, a strong need for such training exists.

To craft a comprehensive, end-learner friendly, high quality, patient safety curriculum, the Patient Safety Education Project (PSEP) will adapt curricular material and resources from Australia’s National Patient Safety Education Project (also called the Australian Framework). Funded by the Australian Council for Safety and Quality in Health Care and using a nationally coordinated, collaborated approach, this project has identified skills, knowledge and behaviors/attitudes in a framework to guide patient safety education for healthcare workers at all levels within healthcare in Australia.

The second prime element of PSEP relates to the Education in Palliative and End-of-life Care project, begun in 1997, which uses a curriculum-driven approach grounded in adult learning methodology to teach content about palliative and end-of-life care to physicians and other medical team members. Another EPEC project focus is to teach the best adult teaching methodologies and practices to course attendees so that they can  return to their home institutions and teach others what they have learned. Extensive resources are provided for these teachers. Using them, they may easily adapt the materials to what best suits their end-learners’ needs and particular organization’s work culture. The EPEC project uses train-the-trainer conferences, various Web-based interactions, such as distance learning modules, email, and listserv announcements to foster an interactive Patient Safety Virtual College (PSVC).

Critical to the success of this initiative is the buy-in of important, patient safety leaders. Therefore, the Governing Council for PSEP is a who’s who of internationally known thought-leaders in patient safety including such luminaries as: Harvey Fineberg, MD, President, Institute of Medicine, Lucian Leape, MD, MPH, Harvard School of Public Health, and Donald Berwick, Institute for Healthcare Improvement. With input from an Advisory Group, a high-level team of editors and writers are building the new curriculum.

Using the above-described Australian Framework, EPEC project approaches to adult learning and dissemination, and other specially selected, high-quality curricular materials, PSEP will build a strong patient safety curriculum, widely disseminate it, and then evaluate it using a controlled trial.  Our initial Become a Patient Safety Trainer (BPST) Conference in Pittsburgh in May 2008 trained mixed groups of administrative and clinical teams from Pittsburgh hospitals, as well as international participants.

The BPST Conferences will be 2½ day immersion conferences that will teach both patient safety content areas and the techniques on teaching others using the PSEP Curriculum. Conferences will run from Friday morning to Sunday midday, allowing busy professionals to take only one day out from the working week and still be home within the weekend. Participants will come in teams from their institution and the teams will include at a minimum one doctor, one nurse and one administrator. There will be a half-day executive track on the last day for those institutions that also can have their chief executive officers (CEOs) and/or chief medical officers (CMOs) attend.

PSEP has been funded by the California Healthcare Foundation, Commonwealth Fund, Zell Center for Risk Research, Jewish Healthcare Foundation and the Health Research and Educational Trust and is a not-for-profit entity that uses a cost-recovery model based on registration to cover operating costs. We have developed a strategy to allow PSEP to be self-sufficient based on a partnership and registration revenue model that provides training for partner institutions and for individuals on a cost-recovery basis.

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EPEC-Oncology (EPEC-O) is an adaptation of the EPEC curriculum for oncologists and other healthcare professionals who provide cancer care.  The EPEC-O project seeks to equip oncologists and other health care professionals in cancer care with the tools to teach core skills in palliative care, including symptom management, ethical issues and communication skills.  The development and creation of EPEC-O was funded by the National Cancer Institute, with supplemental funding from the Lance Armstrong Foundation. The first EPEC-O Train the Trainer workshop was held on June 13-15, 2005 in Renton, VA in collaboration with the American Society for Clinical Oncology (ASCO).  The project has trained over 100 EPEC-O trainers to date.

The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.  Through its involvement with the EPEC-O project, the NCI actively pursued its goals of supporting education of those responsible for cancer patient care and filling the gap in formal medical education curriculum by offering continuing education to practicing and in-training oncologists and related care professionals (nurses, social workers, hospice workers) on end-of-life care for cancer patients.

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Managing patients’ risk for injury while they are receiving care in healthcare organizations is a national priority in the U.S. While this has been true for at least five years – ever since the National Academy of Sciences’ Institute of Medicine (IOM) reported that medical errors were the 4th to 8th largest cause of preventable death -- not much progress has been made preventing them.

The difficulty is that large gaps exist between what should be happening to train medical team members in patient safety in their healthcare environments and what actually is. In a February 2005 meeting, prominent patient safety leaders met as the Governing Council for the Patient Safety Education Project to discuss two of these gaps. First, while high quality patient safety curricular materials have been produced by a variety of key, highly regarded organizations, no consensus currently exists about what a general curriculum for the field of patient safety should be in the U.S. Second, huge numbers of various professional and paraprofessional medical team members have not been trained in the basics of safety science, high reliability engineering, or patient-centered care, so clearly, a strong need for such training exists.

To craft a comprehensive, end-learner friendly, high quality, patient safety curriculum, the Patient Safety Education Project (PSEP) will adapt curricular material and resources from Australia’s National Patient Safety Education Project (also called the Australian Framework). Funded by the Australian Council for Safety and Quality in Health Care and using a nationally coordinated, collaborated approach, this project has identified skills, knowledge and behaviors/attitudes in a framework to guide patient safety education for healthcare workers at all levels within healthcare in Australia.

The second prime element of PSEP relates to the Education in Palliative and End-of-life Care project, begun in 1997, which uses a curriculum-driven approach grounded in adult learning methodology to teach content about palliative and end-of-life care to physicians and other medical team members. Another EPEC project focus is to teach the best adult teaching methodologies and practices to course attendees so that they can  return to their home institutions and teach others what they have learned. Extensive resources are provided for these teachers. Using them, they may easily adapt the materials to what best suits their end-learners’ needs and particular organization’s work culture. The EPEC project uses train-the-trainer conferences, various Web-based interactions, such as distance learning modules, email, and listserv announcements to foster an interactive Patient Safety Virtual College (PSVC).

Critical to the success of this initiative is the buy-in of important, patient safety leaders. Therefore, the Governing Council for PSEP is a who’s who of internationally known thought-leaders in patient safety including such luminaries as: Harvey Fineberg, MD, President, Institute of Medicine, Lucian Leape, MD, MPH, Harvard School of Public Health, and Donald Berwick, Institute for Healthcare Improvement. With input from an Advisory Group, a high-level team of editors and writers are building the new curriculum.

Using the above-described Australian Framework, EPEC project approaches to adult learning and dissemination, and other specially selected, high-quality curricular materials, PSEP will build a strong patient safety curriculum, widely disseminate it, and then evaluate it using a controlled trial.  Our initial Become a Patient Safety Trainer (BPST) Conference in Pittsburgh in May 2008 trained mixed groups of administrative and clinical teams from Pittsburgh hospitals, as well as international participants.

The BPST Conferences will be 2½ day immersion conferences that will teach both patient safety content areas and the techniques on teaching others using the PSEP Curriculum. Conferences will run from Friday morning to Sunday midday, allowing busy professionals to take only one day out from the working week and still be home within the weekend. Participants will come in teams from their institution and the teams will include at a minimum one doctor, one nurse and one administrator. There will be a half-day executive track on the last day for those institutions that also can have their chief executive officers (CEOs) and/or chief medical officers (CMOs) attend.

PSEP has been funded by the California Healthcare Foundation, Commonwealth Fund, Zell Center for Risk Research, Jewish Healthcare Foundation and the Health Research and Educational Trust and is a not-for-profit entity that uses a cost-recovery model based on registration to cover operating costs. We have developed a strategy to allow PSEP to be self-sufficient based on a partnership and registration revenue model that provides training for partner institutions and for individuals on a cost-recovery basis.

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ABSTRACT
The Patient Safety Education Project: Beta Test

Principal Investigator: Linda L. Emanuel, M.D., Ph.D.

 

The Patient Safety Education Project (PSEP) is a long-term project that aims to advance the safety of health services by synthesizing the strongest components of educational interventions and disseminating them effectively to teams of clinicians and administrators. In the first phase of PSEP, we have begun to create and complete the Core Safety Curriculum.  Originally envisioned as a product for U.S. based healthcare providers, work to date in the first phase has produced opportunities to pilot and then implement the PSEP project in Australia as well as the United States.

In the second phase of PSEP, current plans are to test the curriculum in 2007 in Pittsburgh and proceed in 2007/08 to a roll-out nationally in the US and Australia. Participants at the ‘Become a Patient Safety Trainer’ Conferences will apply competitively and include mixed groups of administrative and clinical teams. We will continuously update the web version of the curriculum. In addition, we will provide professional development for some Patient Safety Trainers to become Master Facilitators. PSEP will eventually be a self-perpetuating conference-driven college without walls that will be financially self-sustaining for core operations based on partnership contracts and registration revenue.

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Managing patients’ risk for injury while they are receiving care in healthcare organizations is a national priority in the U.S. While this has been true for at least five years – ever since the National Academy of Sciences’ Institute of Medicine (IOM) reported that medical errors were the 4th to 8th largest cause of preventable death -- not much progress has been made preventing them.

The difficulty is that large gaps exist between what should be happening to train medical team members in patient safety in their healthcare environments and what actually is. In a February 2005 meeting, prominent patient safety leaders met as the Governing Council for the Patient Safety Education Project to discuss two of these gaps. First, while high quality patient safety curricular materials have been produced by a variety of key, highly regarded organizations, no consensus currently exists about what a general curriculum for the field of patient safety should be in the U.S. Second, huge numbers of various professional and paraprofessional medical team members have not been trained in the basics of safety science, high reliability engineering, or patient-centered care, so clearly, a strong need for such training exists.

To craft a comprehensive, end-learner friendly, high quality, patient safety curriculum, the Patient Safety Education Project (PSEP) will adapt curricular material and resources from Australia’s National Patient Safety Education Project (also called the Australian Framework). Funded by the Australian Council for Safety and Quality in Health Care and using a nationally coordinated, collaborated approach, this project has identified skills, knowledge and behaviors/attitudes in a framework to guide patient safety education for healthcare workers at all levels within healthcare in Australia.

The second prime element of PSEP relates to the Education in Palliative and End-of-life Care project, begun in 1997, which uses a curriculum-driven approach grounded in adult learning methodology to teach content about palliative and end-of-life care to physicians and other medical team members. Another EPEC project focus is to teach the best adult teaching methodologies and practices to course attendees so that they can  return to their home institutions and teach others what they have learned. Extensive resources are provided for these teachers. Using them, they may easily adapt the materials to what best suits their end-learners’ needs and particular organization’s work culture. The EPEC project uses train-the-trainer conferences, various Web-based interactions, such as distance learning modules, email, and listserv announcements to foster an interactive Patient Safety Virtual College (PSVC).

Critical to the success of this initiative is the buy-in of important, patient safety leaders. Therefore, the Governing Council for PSEP is a who’s who of internationally known thought-leaders in patient safety including such luminaries as: Harvey Fineberg, MD, President, Institute of Medicine, Lucian Leape, MD, MPH, Harvard School of Public Health, and Donald Berwick, Institute for Healthcare Improvement. With input from an Advisory Group, a high-level team of editors and writers are building the new curriculum.

Using the above-described Australian Framework, EPEC project approaches to adult learning and dissemination, and other specially selected, high-quality curricular materials, PSEP will build a strong patient safety curriculum, widely disseminate it, and then evaluate it using a controlled trial.  Our initial Become a Patient Safety Trainer (BPST) Conference in Pittsburgh in May 2008 trained mixed groups of administrative and clinical teams from Pittsburgh hospitals, as well as international participants.

The BPST Conferences will be 2½ day immersion conferences that will teach both patient safety content areas and the techniques on teaching others using the PSEP Curriculum. Conferences will run from Friday morning to Sunday midday, allowing busy professionals to take only one day out from the working week and still be home within the weekend. Participants will come in teams from their institution and the teams will include at a minimum one doctor, one nurse and one administrator. There will be a half-day executive track on the last day for those institutions that also can have their chief executive officers (CEOs) and/or chief medical officers (CMOs) attend.

PSEP has been funded by the California Healthcare Foundation, Commonwealth Fund, Zell Center for Risk Research, Jewish Healthcare Foundation and the Health Research and Educational Trust and is a not-for-profit entity that uses a cost-recovery model based on registration to cover operating costs. We have developed a strategy to allow PSEP to be self-sufficient based on a partnership and registration revenue model that provides training for partner institutions and for individuals on a cost-recovery basis.

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Program Description:
The Education in Palliative and End-of-Life Care for Oncology (EPEC™-O) Curriculum contained on this CD-Rom is a comprehensive curriculum in palliative and end-of-life care developed specifically for clinicians caring for persons with cancer. The curriculum, divided into 3 plenary sessions, 15 content modules, and 2 teaching skills modules, has a dual purpose:

• To provide the practicing clinician with information and strategies necessary to provide palliative interventions to his/her patients.
• To provide educational tools and materials to use in teaching the core competencies of palliative care to trainees.

The EPEC™-O curriculum was initially produced by the EPEC™ Project at Northwestern University's Feinberg School of Medicine, with major funding provided by the National Cancer Institute and supplemental funding provided by the Lance Armstrong Foundation. The American Society of Clinical Oncology and the Oncology Nursing Society provide partnership support in dissemination of the EPEC™-O curriculum.

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Patients often do not benefit from new palliative care procedures and protocols for a variety of reasons that include, as a major factor, lack of physician education. As the population ages, the need for physicians to learn about palliative care is becoming more critical. To meet this need, the Institute for Ethics at the American Medical Association, with funding from the Robert Wood Johnson Foundation, initiated The Education for Physicians on End-of-Life Care (EPECTM ) Project. The primary goal of The EPEC Project is to educate all physicians in the United States in end-of-life care core competencies. The model used includes training an initial cadre of physicians in the EPEC Curriculum during a two and one-half day conference; these trained physicians, in turn, train a second tier. An evaluation of EPEC involved a qualitative component of interviews and focus groups and a quantitative 35-question survey.

The evaluation found that 62 percent of a sample of 200 physician trainers believed that EPEC training “greatly improved” their knowledge of end-of-care and 72 percent believed that the EPEC training conference “greatly improved” their ability to teach end-of-life care. Ninety-two percent reported that they used the curriculum to teach others, with an estimated 120,000 physicians and other health care professionals receiving training in one or more of the 16 EPEC Curriculum modules.

The authors conclude that the EPEC Curriculum on palliative care defines core competencies for physicians in an area with no previously existing standards of care and that it effectively conveys palliative care information to practicing physicians.

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ABSTRACT
Developing a Nested Whole-Person-Care Guide: Screening & Evaluation Steps

Principal Investigator: Linda L. Emanuel, M.D., Ph.D.

 

BACKGROUND: Awareness of the broad needs of terminally-ill patients has been a defining feature of the palliative care movement, and much of its success is attributed to its whole-person approach. Cancer patients deserve to benefit from this approach whether their illness is curable or incurable. A tool that can systematically identify whole-person needs and direct appropriate care could enhance widespread inclusion of palliative care. The Needs Near the End-of-life Screening Tool (NEST) is a set of questions folded into four themes (Needs of a social nature; Existential needs; Symptoms; and Therapeutic matters). NEST was derived from an extensive study of care needs among a large national cohort of terminally ill patients, many of whom were cancer patients. Distilled from it, to be part of an overall approach, NEST-13 is a brief interview guide that may have significant clinical utility as a whole-picture screening tool that can then guide assessment, intervention and measurement. It also has potential for use by family caregivers, perhaps helping to coordinate their care with that of the professional team.

HYPOTHESIS: We hypothesize that among cancer patients with complications NEST-13 will: 1) improve detection of patient needs; 2) Improve the match between desired and assumed goals of care; and 3) Improve provision of palliative care to this population.

AIMS: We aim to evaluate the ability of the NEST-13 interview to: 1) Detect patient needs; 2) Improve the match between patient, caregiver, and professionals’ goals of care; and 3) Improve provision of palliative care to this population.

STUDY DESIGN: Using a pre-test post-test control group design, we will compare the impact of a sham intervention that will be a survey about the admission process with the impact of the NEST-13 intervention on cancer patients admitted for complications of illness or treatment to a randomly designated cancer ward. The NEST-13 intervention will include: 1) on the day of admission, the primary nurse’s NEST-13 interview with the patient and then with the family caregiver (asking the caregiver about the patient); and 2) a list of possibly appropriate interventions based on the needs it detects that the nurse will present for integration into the team’s care plan at the following day’s morning rounds. Outcome measures will be by survey, record review, and expert review and will include: 1) needs detection; 2) goals synchronization; and 3) palliative services provided.

CANCER RELEVANCE: This 2 year study will take the next steps in evaluating a purpose-designed instrument that can bring whole-person care to all cancer patients. Ultimately, we hope the instrument will help provide the rewards of hospice philosophy care to non-hospice cancer patients, at all points in their illness, and to their family.

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VA grant advances palliative, end-of-life care

The Veterans Administration (VA) awarded a one-year contract last fall to the Education in Palliative and End-of-Life Care (EPEC) Project based at Northwestern University to develop a program to help meet the palliative care needs of veterans and their families and caregivers.

Explains Linda L. Emanuel, MD, PhD, Buehler Professor of Geriatric Medicine at Northwestern University’s Feinberg School of Medicine and principal investigator on the contract, “The VA has a long-standing effort to build comprehensive palliative care services at every Veterans Integrated Service Network [VISN] across the country. We’re in the privileged position of providing our VA colleagues with the opportunity, venue, and resources to adapt our curriculum for their use.” Dr. Emanuel was the founding director of the EPEC Project and heads the Buehler Center on Aging, Health & Society at Northwestern.

The current director of EPEC and co-investigator on the VA contract, Joshua M. Hauser, MD, GME ’07, says the new collaboration arose from discussions at EPEC conferences. Dr. Hauser, assistant professor of medicine, and Michael Preodor, MD, associate director of the EPEC Project and adjunct instructor in medicine, talked with Scott Shreve, DO, national director of hospice and palliative care for the VA. Subsequently, F. Amos Bailey, MD, director of palliative care at the Birmingham (Alabama) VA Medical Center, joined as chair of the EPEC for Veterans Workgroup.

“Scott wanted to do more in palliative care at the VA and do it in a more systematic fashion,” says Dr. Hauser. “This was consistent with other adaptations of EPEC, which is about teaching the principles of palliative care. This gives us an opportunity to apply our curriculum in an integrated health care system.” Most veterans receive care from VA physicians, at VA hospitals, and in VA-affiliated hospices and long-term care facilities, all linked through electronic medical records.

“Palliative and end-of-life care are clearly impacted by the military experience,” says Dr. Emanuel. “Veterans who have seen combat have a unique set of associations when it comes to symptom management and the last stages of life. Post-traumatic stress disorder and the social circumstances confronting veterans as they return from war have to be considered.”

Dr. Hauser lists four goals for this first year of formal collaboration with the VA. The first is to adapt the curriculum to specific needs of veterans and their families. The second is to develop and implement new curricular modules that arise from that adaptation. A third goal is to translate the curriculum into Spanish for the first time. The fourth and final goal is to hold a training conference for groups of caregivers from every VISN. Such VA teams may include physicians, nurses, social workers, and other health care providers.

Michael Nyquist

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DESCRIPTION (provided by applicant): Background: The National Cancer Advisory Board of the Institute of Medicine with the National Research Council called for improved physician education in palliative care in its 2001 report. The Education in Palliative and End-of-life Care (EPEC) Project is an ambitious train-the-trainer program that aims to reach, through its EPEC Trainers, all practicing physicians in the USA with education about the competencies they must possess to play their role in good end-of-life care. It has become a gold standard in palliative care education, and a programmatically sustainable, enduring virtual college. As medical education relies increasingly on distance learning, it is important to provide the EPEC education in a distance learning form. However, little distance learning exists for palliative care. Indeed, distance learning is also in its infancy. A meta-analysis indicates that interactivity is helpful. However, few studies are rigorous, and few programs are designed according to principles of education. Aims and Methods: This resubmission of our previously well-reviewed, and now further improved proposal aims to compare two distance learning programs that use the EPEC curriculum with the traditional EPEC conference-based learning (Conference). One will be built as an interactive distance learning course (IDLCourse). The other is a non-interactive web program (W-Course). We will then recruit a cohort of 550 professionals who have not previously attended an EPEC Conference. We will randomize them to one of three arms: 150 will receive the Conference, 200 to IDL-Course and 200 the W-Course. All three arms will cover the same curricular content. Evaluation: Evaluation will examine the impact of each course on: knowledge acquisition; attitude development; skills acquisition; behavior change; ability to teach the material; and participation in a palliative care education community. Evaluation will entail use of appropriate metrics and will occur at the start and end of the program and again after 3 months. We hypothesize that all arms will achieve similar knowledge gains but will show differences in other outcomes, namely that W-Course will achieve lest, IDL-Course moderate and Conference most gains in attitudes, skills, behaviors, teaching capacity and professional participation. Outcomes of this 3 year study will include: 1. A new, interactive distance learning palliative care education program; 2. Some needed metrics for evaluating palliative care education; and 3. Information on which features of distance learning result in the greatest educational impact.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
education, learning
arm, attitude, community
clinical research

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2006
Department:	MEDICINE
Project Start:	01-SEP-2006
Project End:	30-AUG-2009
ICD:	NATIONAL CANCER INSTITUTE
IRG:	ZCA1

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DESCRIPTION (provided by applicant): Of 28,777 patients 65 yrs or more who died within a year of a diagnosis of lung, breast, or gastrointestinal cancer, >9% had one or more Emergency Department (ED) visits in the last month of life. Many cancer patients also have an ED visit for a cancer-related issue long before their final days. There were 2.1 million cancer-related visits to the ED in the United States between 1997 and 2000. Cancer patients who visit the ED have a high symptom burden, with, on average, over the midway mark on common symptom severity scales. ED's are a refuge for cancer patients in the event of acute exacerbation of symptoms or illness. This is especially so for those of minority status. However, emergency medicine (EM) clinicians have minimal palliative care training. Cancer patients' care goals are often needlessly redirected during an ED visit, and symptoms remain needlessly uncontrolled. Therefore, consistent with the Institute of Medicine and the National Cancer Policy Board's call for the integration of palliative care for patients with cancer and other diseases, we will create: 1. a curriculum-driven, train-the-trainer emergency oncology palliative care education program, and 2. extend its impact in two strategic sites by coupling it with clinical practice reminders linked to curriculum learning objectives. We will evaluate the program's impact on attitudes, knowledge and skills as well as dissemination. For the second part we will also evaluate its impact on clinical behaviors and patient-related clinical outcomes. The program will be modeled on the high-impact Education on Palliative & End-of-life Care (EPEC) Project, and will be called the EPEC-EM Project. Dissemination will be by creation, in partnership with EM specialty associations, of 65 physician and 65 nurse EPEC-EM Trainers. Trainers will be recruited through merit- selected application from EM residency program directors and their program nurse. Trainers will then teach colleagues from their own ED and others beyond their institution, to reach approximately 9,795 end users. We will then provide EPEC-EM education coupled with the clinical reminders, creating one comprehensive intervention to 'blanket' the EDs at the Northwestern Memorial Hospital and Emory's Crawford Long Memorial Hospital. This education+reminders intervention will use an interrupted time-series design. This portion of the project allows us to extend the usual education evaluation to include not only improvement in clinicians' attitudes, knowledge and some skills, but also in clincial behaviours and patient outcomes.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
neoplasm /cancer, neoplasm /cancer palliative treatment
education, medicine, training
clinical research

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2006
Department:	MEDICINE
Project Start:	01-SEP-2006
Project End:	30-AUG-2010
ICD:	NATIONAL CANCER INSTITUTE
IRG:	ZCA1

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Managing patients’ risk for injury while they are receiving care in healthcare organizations is a national priority in the U.S. While this has been true for at least five years – ever since the National Academy of Sciences’ Institute of Medicine (IOM) reported that medical errors were the 4th to 8th largest cause of preventable death -- not much progress has been made preventing them.

The difficulty is that large gaps exist between what should be happening to train medical team members in patient safety in their healthcare environments and what actually is. In a February 2005 meeting, prominent patient safety leaders met as the Governing Council for the Patient Safety Education Project to discuss two of these gaps. First, while high quality patient safety curricular materials have been produced by a variety of key, highly regarded organizations, no consensus currently exists about what a general curriculum for the field of patient safety should be in the U.S. Second, huge numbers of various professional and paraprofessional medical team members have not been trained in the basics of safety science, high reliability engineering, or patient-centered care, so clearly, a strong need for such training exists.

To craft a comprehensive, end-learner friendly, high quality, patient safety curriculum, the Patient Safety Education Project (PSEP) will adapt curricular material and resources from Australia’s National Patient Safety Education Project (also called the Australian Framework). Funded by the Australian Council for Safety and Quality in Health Care and using a nationally coordinated, collaborated approach, this project has identified skills, knowledge and behaviors/attitudes in a framework to guide patient safety education for healthcare workers at all levels within healthcare in Australia.

The second prime element of PSEP relates to the Education in Palliative and End-of-life Care project, begun in 1997, which uses a curriculum-driven approach grounded in adult learning methodology to teach content about palliative and end-of-life care to physicians and other medical team members. Another EPEC project focus is to teach the best adult teaching methodologies and practices to course attendees so that they can  return to their home institutions and teach others what they have learned. Extensive resources are provided for these teachers. Using them, they may easily adapt the materials to what best suits their end-learners’ needs and particular organization’s work culture. The EPEC project uses train-the-trainer conferences, various Web-based interactions, such as distance learning modules, email, and listserv announcements to foster an interactive Patient Safety Virtual College (PSVC).

Critical to the success of this initiative is the buy-in of important, patient safety leaders. Therefore, the Governing Council for PSEP is a who’s who of internationally known thought-leaders in patient safety including such luminaries as: Harvey Fineberg, MD, President, Institute of Medicine, Lucian Leape, MD, MPH, Harvard School of Public Health, and Donald Berwick, Institute for Healthcare Improvement. With input from an Advisory Group, a high-level team of editors and writers are building the new curriculum.

Using the above-described Australian Framework, EPEC project approaches to adult learning and dissemination, and other specially selected, high-quality curricular materials, PSEP will build a strong patient safety curriculum, widely disseminate it, and then evaluate it using a controlled trial.  Our initial Become a Patient Safety Trainer (BPST) Conference in Pittsburgh in May 2008 trained mixed groups of administrative and clinical teams from Pittsburgh hospitals, as well as international participants.

The BPST Conferences will be 2½ day immersion conferences that will teach both patient safety content areas and the techniques on teaching others using the PSEP Curriculum. Conferences will run from Friday morning to Sunday midday, allowing busy professionals to take only one day out from the working week and still be home within the weekend. Participants will come in teams from their institution and the teams will include at a minimum one doctor, one nurse and one administrator. There will be a half-day executive track on the last day for those institutions that also can have their chief executive officers (CEOs) and/or chief medical officers (CMOs) attend.

PSEP has been funded by the California Healthcare Foundation, Commonwealth Fund, Zell Center for Risk Research, Jewish Healthcare Foundation and the Health Research and Educational Trust and is a not-for-profit entity that uses a cost-recovery model based on registration to cover operating costs. We have developed a strategy to allow PSEP to be self-sufficient based on a partnership and registration revenue model that provides training for partner institutions and for individuals on a cost-recovery basis.

Curricular materials are all prefaced by a trigger tape to facilitate learning. Below is the tape that will accompany an opening plenary for PSEP.

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An estimated 250,000 central-line associated blood stream infections (CLABSIs) occur in hospitals each year, and as many as 62,000 patients who get these infections die as a result. HRET, through a contract with the Agency for Healthcare Research and Quality (AHRQ), and in partnership with the Johns Hopkins University Quality and Safety Research Group and the Keystone Center for Patient Safety and Quality of the Michigan Health & Hospital Association will implement in over 100 hospitals in 10 states nationwide a patient safety program proven to dramatically reduce CLABSI. The project will replicate the success of Michigan hospitals by implementing the Comprehensive Unit-Based Safety Program (CUSP) and other targeted interventions. HRET and our partners will work with consortia of 10 state hospital associations, quality improvement organizations, and public health agencies, and at least 10 participating hospitals from each of the 10 states. The ten states will join the project in three waves, or "cohorts."  A key goal is to build capacity at the state level. The project will develop a diverse group of state hospital associations and hospitals that have received training and are implementing the CUSP/CLABSI patient safety program. The project leaders are John Combes, MD, principal investigator, and Peter Pronovost, MD, PhD, co-principal investigator.

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NIA Expands Arts Program Aimed at Debunking Negative Aging Stereotypes

Gail Brooks, 74, created a Japanese floral arrangement to express her feelings about the Vital Visionaries, an arts-based program developed by the National Institute on Aging (NIA), part of the National Institutes of Health (NIH). To represent the older participants, she included a Harry Lauder Walking Stick, a twisting shrub, because “like some of us, it’s gnarled but there's still plenty of life in it. The daisies symbolize the fresh attitudes of the medical students, and the variegated Aucuba leaves represent the mingling of the young students and us older people.”

The mingling of young and old is at the heart of the Vital Visionaries project, which is being expanded to help rout negative stereotypes of aging. The goal of the program is to improve future doctors’ attitudes towards older people and to awaken in older people awareness of their creative possibilities. It is managed for NIA by the Society for the Arts in Healthcare, a Washington, D.C.-based non-profit corporation that promotes the incorporation of the arts in health care.

Major medical schools and museums involved as 2006 Vital Visionaries partners are:

• Columbia University College of Physicians and Surgeons and the Museum of Modern Art in New York.
  
  
• The Northwestern University Feinberg School of Medicine and the Mexican Fine Arts Center Museum in Chicago.
  
  
• Washington University Medical School and the Contemporary Art Museum St. Louis.
  
  
• The University of South Florida, Florida Center for Creative Aging, in Tampa and the Tampa Museum of Art and the Salvador Dali Museum in St. Petersburg.
  
  
• The University of Florida and the Samuel P. Harn Museum of Art in Gainesville.

In the spring and summer of 2006, the institutions will pair first-year medical students with healthy older people for a hands-on art journey at the museums. Before and after the four, two-hour art programs, the medical students and older participants will be asked about their attitudes towards aging.

“The Vital Visionaries is one of those rare programs where everyone has a lot of fun while achieving important goals,” said Judith A. Salerno, M.D., M.S., NIA deputy director. “Too often medical students only interact with ill and frail older people, so they may develop a skewed perspective. A first step towards improving care for older people is to improve how medical students see them.” In the 2004 pilot, medical students from Johns Hopkins School of Medicine experienced a significant improvement in their attitudes towards aging and older people.

The Vital Visionaries program is based on research that suggests medical students who interact with older people early in their medical training develop better attitudes towards aging. A University of Oklahoma study observed that “health care professionals tend to believe that most older individuals are frail and dependent and that those who are not are atypical” despite data showing that most elders are in good health and live in the community (Marie A. Bernard, M.D.).

The Vital Visionaries program was also based on Yale University studies that indicate older people who internalize negative stereotypes of old age suffer greater stress on their hearts and live fewer years (Becca Levy, Ph.D.). Preliminary results of research at the George Washington University now suggest a possible link between arts participation and wellness in older adults (Gene D. Cohen, M.D., Ph.D.).

This progressive program coincides with a decline in the number of physicians who specialize in medical problems associated with aging. Today, there are about 9,000 geriatricians in the United States, but an estimated 36,000 geriatricians will be needed by 2030 to treat the growing numbers of older people, according to a 2004 study contracted by the Association of Directors of Geriatric Academic Programs.

“The beauty of using art as a way to communicate with my partner Elaine [Rosenbloom, 76] is that we were both new to it so we could explore it together,” said Johns Hopkins medical student Cesar Briceno, 26. “I don’t know if I’m going to be a geriatrician but my attitude towards geriatrics has improved tremendously.”

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What is the Education in Palliative and End-of-Life Care for Oncology Project?
In partnership with the American Society of Clinical Oncology (ASCO) and the National Cancer Institute (NCI), the Lance Armstrong Foundation (LAF) will sponsor the Education in Palliative and End-of-life Care for Oncology (EPEC-O) Train-the-Trainer workshop. The workshop will offer a comprehensive curriculum to optimize care for patients with cancer throughout the course of their illness. Produced through the EPEC Project at the Buehler Center on Aging at Northwestern University's Feinberg School of Medicine, the Train-the-Trainer workshop is a unique educational event that gives cancer care professionals the necessary knowledge and skills to train others about the best practices in supportive oncology and end-of-life care. The workshop addresses the important aspects of comprehensive cancer care, including combining antineoplastic therapy and palliative care, managing pain and symptoms, discussing clinical trials and preventing professional burnout.

How are the Lance Armstrong Foundation (LAF) and EPEC-O working together to improve the lives of people affected by cancer?
The LAF and EPEC-O are partnering to improve communication between health care professionals and cancer survivors by educating survivors and caregivers about cancer survivorship issues from the point of diagnosis through long-term treatment effects and end-of-life care. Through the partnership, EPEC-O will develop a program that includes educational materials to help facilitate a positive, proactive role and relationship between patients and health care teams. The program will be launched at the American Society of Clinical Oncology's annual meeting.

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DESCRIPTION (provided by applicant): The number of cancer survivors is growing steadily. Whether cancer patients are recovering from palliative surgery, are in remission, or are cured, they often need rehabilitation care and symptom management. As the field of palliative care broadens its definitions to include care of all illness related suffering, moving 'upstream' beyond hospice care, opportunities to collaborate between palliative care and rehabilitation medicine will also multiply. Although both fields stress interdisciplinary care and innovative approaches to maintaining quality of life and functional status, palliative care and rehabilitation medicine are often thought to be at cross-purposes. There may be the belief that a patient in rehabilitation cannot be a patient with palliative care needs because he or she is "recovering." Or it may be felt that a patient in palliative care cannot be a patient with rehabilitation needs because he or she is "dying." Because of this, it is crucial to consider how the disciplines of rehabilitation and palliative care overlap. This five-year series of annual conferences will foster an important dialogue between these two fields at Northwestern, in Chicago and we hope on a national basis. The objectives of the conferences will be to: 1. Describe approaches to palliative and rehabilitation medicine to enhance survivor care by educating physicians, allied health personnel and clinical researchers; 2. Demonstrate parallels and contrasts in clinical care, ethical issues and social needs between patients in palliative and rehabilitation medicine; 3. Identify opportunities for collaboration between palliative medicine and rehabilitation medicine in order to create and nurture a network of colleagues in establishing clinical relationships and collaborative research for palliative and rehabilitation medicine. Each conference will focus on two clinical syndromes common to patients with cancer and seen in rehabilitation and palliative medicine. In the first year, this will include pain and functional decline. The conference will explicitly examine the clinical, ethical and social issues of these syndromes. Faculty will include physicians, a nurse, a psychologist and a social worker who work, teach and conduct research in rehabilitation and palliative settings.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
cancer rehabilitation /care, health care service planning, meeting /conference /symposium, neoplasm /cancer palliative treatment
health services research tag, medical rehabilitation related tag, travel

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2005
Department:	MEDICINE
Project Start:	01-JUN-2005
Project End:	31-MAY-2006
ICD:	NATIONAL CANCER INSTITUTE
IRG:	ZCA1

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ABSTRACT
ASSERT Expansion Project
Principal Investigator: Madelyn Iris, Ph.D.

 

There is a growing need for research training and technical assistance for social services and community health providers in an era of heightened expectations for accountability as government and charitable foundations increasingly require documentation of program outcomes. However, not-for-profit and government-sponsored social and health services providers frequently do not have the staff, resources or training to conduct systematic research, especially those serve high numbers of individuals living in poverty, including ethnically-affiliated agencies that face additional barriers to good evaluation due to linguistic and cultural differences. ASSERT addresses the continuing need for research training, technical assistance, and project-specific consultation for social and health services providers. ASSERT has four program objectives: (1) Bring together community-based social and health services organizations and university-based researchers to foster relationships leading to improved quality in the on-going evaluation efforts of social services programs. (2) Engage in evaluation capacity building within partnering organizations and agencies, by implementing strategies proven to be successful at achieving this goal. (3) Offer opportunities for training and skill-building, tailored to the needs of aging and health services providers. (4) Foster opportunities for collaboration and information sharing amongst partner agencies, thereby furthering knowledge of service needs and improving outcomes of service provision. To meet these objectives, ASSERT will: Recruit five new ASSERT members, targeting social and health services organizations, with a specific emphasis on those that serve low income, minority, and ethnic elders. (2) Provide technical assistance and consultation to member agencies for specific evaluation and research efforts. (3) Offer the workshop series, "Improving Outcomes through Organizational Learning" to member agencies. (4) Offer 3 seminars on specific evaluation methodologies, to a general audience of social and health services provider organizations.

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DESCRIPTION (provided by applicant): Denys Lau, Ph.D., is a full-time tenure-track Assistant Professor at Northwestern University's Buehler Center on Aging. His long-term career goal is to become a funded, independent investigator in health services research that focuses on quality and safety of medication use among vulnerable and seriously-ill older adults. To achieve that goal, he seeks the Mentored Research Scientist Development Award (K01) to expand his existing knowledge in two substantive areas (palliative and hospice care treatment approaches, and family studies in the aging population) and two methodological areas (original data collection using qualitative and quantitative research techniques). This project, incorporating a tailored curriculum and mentored field experience, will generate the necessary experience and resources for Dr. Lau to submit future awardable R-01 applications. An extension of Dr. Lau's prior research on inappropriate medication use among elderly patients, the current study aims to better understand the skills necessary for effective management of medication regimens, including opioid analgesics, among informal caregivers of hospice patients living at home. Specifically, the study will: (1) develop the concept of caregiving skills in effective medication management, including a conceptual framework describing its domains and relationships with patient health status and caregiver confidence; (2) develop, refine, and validate an instrument to measure caregiving skills in effective medication management (CG-SEMM instrument); and (3) examine the relationships among caregiving skills in effective medication management, patient health status, and caregiver confidence. This career development research proposal will involve primary data collection using three techniques (focus groups, semi-structured interviews, and longitudinal survey study), and employ a mixed-method approach combining complementary qualitative and quantitative research procedures. Ensuring the appropriate use of medications among older adults is a well-recognized, important public health concern. For those older adults who rely on family members for medication assistance, a validated assessment of the skills necessary for effective medication management will help healthcare providers to screen for family members who will need further training. With family members taking on more responsibilities in caring for their loved ones, the significance of this study will be profound in improving not only the proper use of drugs for older-adult patients, but also the confidence of family members.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
caregiver, hospice
aging, analgesic, analytical method, attention, base, career, chemotherapy, computer, concept, conditioning, curriculum, data collection, decision making, experience, family, focus group, health, interview, love /affection, pain, public health, rectum /anus, role, teacher, training, university
clinical research

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2007
Department:	BUEHLER CENTER ON AGING
Project Start:	01-MAY-2007
Project End:	30-APR-2012
ICD:	NATIONAL INSTITUTE ON AGING
IRG:	NIA

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Colorectal Cancer Screening in Japanese American Elders in Chicagoland.
Frances Chikahisa, Japanese American Service Committee, and Denys Lau, Assistant Professor, Buehler Center on Aging, Health & Society, Feinberg School of Medicine.

Project Summary

The United States Preventive Services Task Force recommends colorectal cancer (CRC) screening for all adults age 50 and over. However, Asian Americans have the lowest utilization of any racial/ethnic group for up-to-date CRC screening. Among Asian Americans, Japanese men and women have the highest prevalence and mortality rate of CRC. Evidence also suggests that nationally elders living with adult offspring are less likely to obtain CRC screening than elders living alone or with their spouse. Furthermore, in 2007, the Japanese American Service Committee (JASC) and Northwestern’s Buehler Center on Aging, Health & Society (BCoAHS) jointly conducted a needs assessment of elders of Japanese ancestry (Nikkei elders) in Chicagoland. The assessment found that many Nikkei elders lived with or close to their adult offspring but intergenerational communication about health issues was lacking. Many adult offspring were themselves aging but ignoring their own well-being because of competing life priorities and caregiving stress. JASC has observed anecdotally a rise in cases of CRC in
Chicagoland’s Nikkei elders and is interested in launching a new prevention program in this area.

These factors motivated JASC and BCoAHS to propose a collaborative research project to: (1) describe intergenerational communication about health issues in Nikkei families, (2) explore target recipient(s) of educational materials in Nikkei families to increase CRC screening among Nikkei elders, and (3) assess potential attitude change of adult-offspring caregivers toward CRC screening.

This study will provide preliminary data on how to better serve and improve the health of
Chicagoland’s Nikkei community; continue building JASC’s and BCoAHS’s research capacity; and generate experience and resources for fundable future grant applications oriented toward designing more effective, evidence-based, educational programs to address disparities in CRC screening among Asian Americans and other populations. We believe that this project aligns with the goals of ARCC’s Community-Based Participatory Research Implementation Grants.         

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Nikkei Community Assessment
For more than fifty-five years, starting in the post-World War II resettlement era, the Japanese American Service Committee (JASC) has strived to serve the needs of the Nikkei (people of Japanese ancestry) community in the greater Chicago area. During the past five years, in response to the changing nature of the community, the JASC has been undergoing a process of reassessment of its organization and purpose. In order to direct agency efforts more effectively, the JASC identified that it needed specific information about the community and its current and future needs, concerns, resources, and expectations. This type of information has not been collected from the Nikkei community in nearly twenty-five years.

In the spring of 1999, the JASC received a two-year grant from the Retirement Research Foundation for the Chicago-area Nikkei Community Assessment (NCA). BlueCross BlueShield of Illinois provided additional funding. This project was designed to define the extent of demographic and socioeconomic changes in the community and how these changes impact it and the JASC's services and programs. The Retirement Research Foundation awarded the JASC this grant as part of their first Organizational Capacity Building Initiative, a program designed to improve the management and governance of nonprofit organizations serving the elderly in Lake, Cook, and DuPage counties. As the only Japanese American social service agency in the Midwest, the JASC was in a unique position to undertake this project with invaluable input and support from other Nikkei organizations, institutions, groups, and individuals.

In order to understand the Nikkei Community from an individual to a broad perspective, data was collected through focus groups, surveys and census data. While we definitely wanted to understand the needs and resources of the current senior population (those over 60), we also wanted to understand the future needs and resources of the Nikkei community. We felt that these future needs might best be expressed by those under 60 — a group typically geographically dispersed and less involved in Nikkei organizations. We actively reached out to include this group and 50% of respondents are younger than age 60. We also wanted to include those whose primary language is Japanese. In total, approximately 3,900 copies of the NCA in English or Japanese were distributed via direct mail or in person at community gatherings. One thousand one completed surveys were returned, and the responses analyzed.

NCA respondents placed a high value on programming that addresses multiracial topics. However, preservation of cultural heritage was ranked the foremost issue of concern facing the Japanese American community today.

Among the other conclusions of the NCA:

• Social service organizations such as the JASC once served an exclusively ethnic client base. Now most funding agencies require nondiscrimination in accessibility to services, staffing, and governance. Providing services in a diverse context that includes Japanese cultural competency in the mix enables agencies to continue to serve Nikkei clients.
• Nikkei seniors are underserved. Programs that support the cultural values of privacy and independence and can provide services across wider geographic and economic boundaries can decrease the service gap.
• Organizations will need to have a conscious, direct and active approach to reach out and create connections to community members who are disengaged and less involved in formal groups.

The most important product of the NCA is the realization that the Japanese American community can preserve its culture and sustain itself if both organizations and individual members make the commitment to work together.
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DESCRIPTION (provided by applicant): Dr. Michelson's long term career goals are to become a pediatric critical care physician scientist investigating interventions designed to improve end-of-life care and a nationally known expert in bioethics. To this end, Dr. Michelson has completed a Master's degree in Public Health and obtained funding to support research in pediatric end-of-life decision making. Her previous research used qualitative and quantitative methods to better understand the views of Pediatric Intensive Care Unit (PICU) patients' parents on end-of-life decision making. Her immediate goals are to increase her knowledge of and experience in qualitative methods, instrument development/testing, and bioethics so that she can become an independent investigator sustaining her research with external support. Her career development and training will be overseen by Dr. Joel Frader and Dr. Linda Emanuel. She will also receive support and guidance from a multidisciplinary mentorship committee. The research and training will take place at Children's Memorial Hospital, Northwestern University and the University of Chicago MacLean Center for Clinical Medical Ethics. Dr. Michelson's career development plan includes: 1) selective coursework in qualitative methods, instrument development/testing, health care communication, decision making, palliative care, bioethics, and manuscript preparation; 2) conferences and seminars; 3) participation in related research; and 4) gaining proficiency in conducting qualitative research and instrument development/testing. Her research purposes to develop and conduct a preliminary evaluation of an advance care planning worksheet for parents of PICU patients. Currently, no practice-derived, empirically-validated advance care planning tool exists in pediatrics. She will: 1) collect experiential data from parents of deceased children and PICU caregivers using qualitative methods; 2) create the worksheet using the experiential data and other relevant resources; and 3) perform pilot testing of the worksheet using focus groups. After developing the worksheet, Dr. Michelson will obtain additional funding to do a study that evaluates the worksheet in the clinically setting and tests the hypothesis that the advance care planning worksheet will aid parents through the process of end-of-life decision making and facilitate communication between parents and caregivers thereby improving pediatric end-of-life care.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
child rearing, parent
base, career, caregiver, children, communication, conditioning, critical care, decision making, ethics, experience, face, family, focus group, health care, hospital, intensive care, interview, meeting /conference /symposium, nurse, nursing, patient oriented research, pediatrics, physician, preference, public health, sectioning, training, university
clinical research

Institution:	CHILDREN'S MEMORIAL HOSPITAL (CHICAGO)
	2300 CHILDREN'S PLAZA, BOX 205
	CHICAGO, IL 606143394
Fiscal Year:	2007
Department:
Project Start:	05-FEB-2007
Project End:	31-JAN-2012
ICD:	EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENT
IRG:	CHHD

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Description (adapted from investigator's abstract): A common anecdotal report of older adults is that they remember events that occurred when they were younger better than more recent events. When this reversal of a normal monotonic retention function is examined carefully, either by asking for life stories or by curing individual autobiographical memories with words, older adults do indeed remember more events from when they were 10 to 30 years old. This "bump" phenomenon is one of the few cognitive effects of aging that is not a decrement in performance. It has many explanations that have resisted being teased apart using standard techniques of cognitive psychology. However, by examining people who migrated at various points in their lives, changing language, culture, and environment, we propose to separate classes of explanations. A central aspect of autobiographical memory is language, yet little work has examined whether memory, or discourse of any kind, is easier to retrieve in the language in which it was encoded. Yet a few studies with young adults, clinical data from psychotherapeutic treatment, and the introspections of older bilinguals indicate that it is. By examining the memories of people who migrated and learned a second language at different times (and those who did not migrate or learned both languages simultaneously, or know only one language), we can examine such questions. Since many older adults are bilinguals who have changed their relative competence in their languages over their lifespans, and even more have made major migrations, this work has practical as well as theoretical interest for the nature of language and memory in adult development. Tasks include a narrative and a word-cued autobiographical memory procedure, and a bilingual language assessment. Participant populations recruited to help separate effects include adult Hispanics who migrated to either Anglo or Hispanic communities in the US, Poles who were granted asylum in Denmark, monolingual non-migrating matched controls, and older monolingual adults who migrated within the US to non-retirement communities, age segregated retirement communities, and long-term care facilities.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
culture, language, memory
Hispanic American, cognition, human migration, nonEnglish language, psycholinguistics
clinical research, human old age (65+), human subject

Institution:	DUKE UNIVERSITY
	2200 W. Main St.
	DURHAM, NC 27705
Fiscal Year:	2002
Department:	PSYCHOLOGY AND NEUROSCIENCE
Project Start:	01-SEP-1999
Project End:	31-AUG-2004
ICD:	NATIONAL INSTITUTE ON AGING
IRG:	HUD

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DESCRIPTION (provided by applicant): Whitney P. Witt, PhD, MPH is a child health services researcher and a new faculty member at Northwestern University. This proposed NICHD KOI Mentored Research Scientist Development Award will provide the necessary support to facilitate Dr. Witt's successful transition from a junior to independent investigator in the field of child and family population health research. Her long-term goal is to develop an interdisciplinary research program dedicated to improving the health and mental health of children with chronic conditions and their families through better understanding how childhood chronic illness affects family members over time. This goal will be achieved through a 5-year program of didactic training and mentored research with two objectives: 1) to acquire new skills in behavioral biology, econometric and sociological research, and child and family demography and 2) to develop a framework of preliminary results to support an independent research proposal at the end of the award. The objectives of the award will be addressed through three specific aims corresponding to three phases of progress in Dr. Witt's career development. Aim 1 seeks to determine the relationships among child illness level, family burden, and child healthcare use and costs. Aim 2 seeks to characterize the pathways through which changes in family burden impact the health and mental health of children with chronic illness. Aim 3 seeks to determine the feasibility, performance, and comparability of biological markers of psychological stress in caregivers and caregiver-reported survey measures of stress and how such measures are related to child health outcomes. The aims of this award are designed to provide the additional experience and resources necessary to support the development of an independent R01 research proposal at the end of the award for a longitudinal study of parents and their children with chronic conditions to document the impact, both perceived and biological, of stress among caregivers, and likewise the impact of caregiver stress on the outcomes of the children they care for.

Public Health Relevance:
This Public Health Relevance is not available.

Thesaurus Terms:
asthma, caregiver, children, chronic disease /disorder, family structure /dynamics, psychological stressor, quality of life
biomarker, coping, health care service utilization, health economics, longitudinal human study, low socioeconomic status, mental health, outcomes research, racial /ethnic difference, social psychology, socioeconomics
behavioral /social science research tag, clinical research, data collection methodology /evaluation, human subject, mathematical model

Institution:	NORTHWESTERN UNIVERSITY
	750 N. Lake Shore Drive, 7TH
	CHICAGO, IL 60611
Fiscal Year:	2005
Department:	MEDICINE
Project Start:	01-JUN-2005
Project End:	31-MAY-2010
ICD:	EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENT
IRG:	CHHD

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