The Center for Applied Ethics: Chronic Illness

Project on Adult Care in Cystic Fibrosis (PAC-CF)
2003-2010: National Institutes of Health/National Institute of Heart, Lung, and Blood
EDC is collaborating with ten Cystic Fibrosis Centers across the country on a study whose purpose is to improve the quality of life and care of adults with cystic fibrosis (CF) by gathering empirical data on the quality of life, the symptom experience, the patterns of care, and the needs of adults with CF and their families as their illness progresses. This longitudinal panel study of adult with CF employs three methods of data collection: (1) self-administered mail-out, mail-back surveys of adults with CF and a family member or friend closely involved in their care, (2) telephone interviews with adults with advanced CF, family members of adults with CF who die, and physicians, and (3) medical record abstraction. Recruitment of adults with CF to participate in the study was completed in May, 2005 with 333 adults enrolled.

Promoting Self-Management: CF as a Model Case
2007-2010 National Institutes of Health/National Institute of Child Health and Human Development
This project will conduct qualitative research with adolescents with CF and their parents to discover and document barriers to and facilitators of self-management, use this knowledge to complete development of an innovative intervention to promote self-management, and then conduct a formative evaluation of the intervention. The Peer Group Intervention will incorporate the crucial element of personal meaning, which we hypothesize will lead to more robust effects than prior interventions based solely on constructs from social cognitive theory. Adolescents with CF will be asked to actively express their experiences with their disease and treatment regimen through the creation and sharing of illness and self-management narratives. Adolescents will participate in an online virtual community, which will “meet” monthly for six months to exchange and discuss video portraits which the teenagers will create in-between the scheduled online community meetings. Through these videos and online meetings, the teens will show and tell how they carry out various time-consuming and complex CF self-management tasks and reflect on the meaning and impact of the disease and its treatment regimen on their personal goals, quality of life and sense of self. Intervention Mapping, a systematic planning process for intervention development that specifies procedures for integrating theoretical constructs and empirical evidence, will guide development of the intervention.

IWP Process Evaluation
2008-2010: NY State Health Foundation/Bronx Lebanon Hospital Center/Martin Luther King Jr. Health Center
The Intensive Wellness Program (IWP) is an enhanced primary care program designed specifically to serve Medicaid patients who are at the greatest risk of repetitive, high cost utilization of medical care. The Bronx-Lebanon Hospital Center (BLHC) and the Martin Luther King Jr. Health Center, (MLK), a federally qualified primary care clinic affiliated with BLHC, jointly run the IWP. In the IWP, primary care and mental health care are offered conjointly, through a co-located team of clinicians including Family Medicine, Psychiatry, Social Work, Advance Practice Nursing, and Community Health Workers. In addition to primary care and behavioral health services, the IWP provides: (1) comprehensive multidisciplinary assessment; (2) community outreach; and (3) intensive patient tracking and case management. The IWP program, housed in its own building, provides an easily accessible and comfortable physical space uniquely for the targeted patients. The IWP is located in the South Bronx New York. EDC will carry out a process evaluation to describe the core elements of the IWP and patient perceptions about the program. The process evaluation will draw on program and patient records as well as in-depth interviews with IWP patients. A summary of the findings from the process evaluation will be useful to the IWP program planners to help them to improve the provider training and program implementation. Additionally, the process data will help to describe and explain the impact of the IWP on the care of Medicaid patients from the perspective of the patients.

Consumer Perspectives on the Promise of CF Gene Therapy
2000-2004: National Institutes of Health/National Human Genome Research Institute
This project, conducted with partners at Cystic Fibrosis Worldwide, Temple University, St. Vincent’s Hospital and Medical Center of New York, and Brigham and Women's Hospital, assessed the impact of gene therapy research publicity, and its promise of cure, on patients, families, and their physicians. To achieve this goal, the study team conducted a content analysis of gene therapy research coverage in major U.S. newspapers and interviewed adult CF patients and parents of children with CF in Philadelphia and Boston and physicians at CF centers in New England. Interview results were used to develop a consumer-focused survey tool which was administered to adult CF patients and parents of children with CF cared for in New England and to members of Cystic Fibrosis Worldwide across the U.S. Findings were used to guide practice and policy.

Adoption of Cancer Pain Guidelines in Managed Care
1996-2001: The Agency for Health Care Policy & Research
Education Development Center, Inc., the Fallon Healthcare System, Massachusetts General Hospital, and Frontier Science and Technology Research Foundation conducted a group-randomized trial to evaluate a voluntary, two-tiered dissemination strategy designed to reduce pain among cancer patients by improving primary care nurses' and physicians' use of the AHRQ cancer pain guideline. Four treatment clinics received an intervention that 1) encouraged caregivers to adopt routine procedures for pain screening, assessment, follow-up, and documentation and 2) provided nurses and physicians with education to improve opioid knowledge and confidence in prescribing opioids. Four clinics served as control sites. Primary care physicians grew in their knowledge of opioids and prescribed more medications for pain relief for their cancer patients in pain.

Mayday PainLink
1995-1999: The Mayday Fund
2000-2001: Self-funded through hospital fees
CAE established an online virtual community of health professionals working in more than 60 hospitals and nursing homes. The goal was to use the Internet and other media to bridge the gap between knowledge of effective pain management procedures and their effective application in real-life clinical settings. Most pains -- acute post-operative pain, many types of chronic pain, the pain experienced by the terminally ill -- can be relieved. Although the science of pain management is well-established, few physicians, nurses, and other clinicians have been adequately trained in the necessary skills, and many healthcare institutions face barriers in ensuring that pain is an important priority. Each participating institutions established an interdisciplinary team to close the gap between knowledge and practice. CAE staff helped the teams to use continuous quality improvement (CQI) processes to evaluate pain management in their settings and to develop an action plan specific to their institution's needs. To support such initiatives, CAE offered technical assistance that included a resource-rich website, e-mail discussion, online guests, the Pain Management Inventory (a clinician survey of knowledge, attitudes, institutional barriers, and pain management learning needs), topic-focused print resources, and expert professional consultation. The Mayday PainLink website is an archived website that is still accessible to the public. See www2.edc.org/PainLink