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Current Research at the Phyllis F. Cantor Center

  • Ongoing Studies

    Cancer Awareness and Needs in Persons with High Risk for Hereditary Breast and Ovarian cancer from underserved communities

    Principal Investigator: Meghan Underhill, PhD, APRN, AOCNS
    Co-Investigators: Karleen Habin, RN, MS; Kristen Shannon, MS, LGC; Jean Boucher, PhD, APRN; Kathryn Robinson, RN, MS

    Dr. Underhill has partnered with the Cancer Resource Foundation to understand the needs of individuals receiving genetic testing in underserved communities. The aims of the work are to understand needs for health promotion and wellness intervention in this high risk underserved population as well as characterize the population served. Information gained from this work will guide future community based intervention development.

    Patient reported outcomes in individuals living with familial pancreatic cancer

    Principal Investigator: Meghan Underhill, PhD, APRN, AOCNS
    Co-Investigators: Sapna Syngal, MD, MPH; Jannette Lawrence, CGC (MGH)
    Funding: Mittleman Family Fund, KL2cMerit KL2 TR001100 Harvard Catalyst

    There is a subpopulation of persons living with high risk for pancreatic cancer due to hereditary or familial factors. Though it is known that identifying pancreatic cancer at an earlier stage can lead to improved surgical treatment outcomes, no standard of care exists to guide clinicians with surveillance or prevention. The Dana Farber Cancer Institute (DFCI) Gastrointestinal (GI) Genetics and Cancer Prevention Program is testing mechanisms to identify and screen individuals at high risk for pancreatic cancer. This is a cross-sectional survey study aimed at describing participant outcomes and the relationships between demographic and personal factors (age, gender, family history, cancer risk perception, cancer worry, PROMIS Social Support scale) and psychosocial outcome measure scores (PROMIS Global Health and Health Belief Model, and Impact of Event scales) and engagement in self-care or wellness behaviors (i.e., yoga, medication, mindfulness, acupuncture, massage, psychotherapy, support group attendance, healthy lifestyle choices, and engaging in cancer screening).

    Engaging patients to improve the process of cancer genetic counseling for multi-gene panel testing

    Principal Investigators: Meghan Underhill, PhD, APRN
    Co-Investigators: Jill Stopfer, MS, LCGC; Anu Chittenden, MS, LCGC; Judy Garber, MD, MPH; Daniel Gundersen, PhD
    Funding: Friends of Dana-Farber Cancer Institute

    Advances in cancer genetics are revolutionizing the way care is delivered to patients with cancer, and increasingly to those with identifiable genetic risk for cancer. Historically, genetic testing for breast and ovarian cancer risk was done most commonly for two genes, BRCA1 and BRCA2, which confer dramatically increased risks for both breast and ovarian cancer. Advances in genetics have now included the identification of many additional genes, some of which confer a more modest degree of cancer risk. Improvements in laboratory techniques have made it possible to test many genes at once, known as multi-gene panel testing. Multi-gene panel testing is now routinely offered as part of clinical care. This represents a paradigm shift in the way genetic counseling and testing is offered, and one in which once again, Dana-Farber has an opportunity to lead a study that will shape the future model of cancer genetic counseling in clinical care. The aim of this project is to evaluate patient reported knowledge, risk perception, psychological impact and acceptability of genetic counseling and testing experience, health behavior intentions, and family communication in individuals with breast or gynecological cancer who have undergone genetic counseling and testing for multi-gene panel testing in the past 12 months utilizing mixed qualitative and quantitative methods.

    The long-term goal of this project is to apply patient reported experiences to inform the development of improved practice models in cancer genetics care that could dramatically change the way services are offered at DFCI and serve as a national service delivery model.

    Development and evaluation of an educational website for Hodgkin lymphoma survivors

    Principal Investigator: Meghan Underhill, PhD, APRN
    Co-Investigators: Donna Berry, PhD, RN, FAAN; Ann Partridge, MD, MPH
    Funding: Oncology Nursing Society Foundation

    There are currently approximately 200,000 survivors of Hodgkin Disease (HD), also known as Hodgkin Lymphoma, living in the United States, and the American Cancer Society reports that in 2016 there will be 8,500 new cases. HD affects both men and women across all ages, occurring most frequently in early adults ages 15 to 40 and in a cohort of individuals in late adulthood. Over half (56 percent) of patients are diagnosed with localized or regional disease and have a 5 and 10-year survival rate of 91 percent and 80 percent respectively. Even if diagnosed with stage III or IV HD 5-year survival rates are as high as 65 to 80 percent. Therefore, many individuals are now living as cancer survivors with HD and are at risk for long-term and late effects from their cancer and cancer treatments. Individuals with these cancer and treatment related risks are recommended to care for themselves differently than individuals from the general population. In 2005 the Institute of Medicine published a seminal report indicating the relevance of survivorship care needs to public health. This report aimed to charge health scientists, practitioners, and consumers to be aware of survivorship care needs and address those needs through quality research and practice change. Since then, cancer survivorship has been prioritized and incorporated into the care of most major academic cancer centers. Despite this shift in survivorship care, survivors of HD still report not receiving adequate survivorship information, support, and care. Survivorship needs of HD survivors are complex, multifactorial, unique to everyone, and often changing. Providing HD survivors with knowledge and tools for survivorship self-care and follow-up medical care can be a powerful adjunct to clinical services. The study aims to build on our preliminary development work to engage key patient and provider stakeholders to develop a comprehensive psychoeducational intervention for HD survivors through a user-centered design framework.

    Implementing a systems-level tobacco treatment intervention into a thoracic oncology program

    Principal Investigator: Mary Cooley, PhD, RN, FAAN
    Co-Investigators: Raphael Bueno, MD; Jonathan Winickoff, MD
    Funding: Dana-Farber/Harvard Cancer Center Nodal Award

    This research initiative creates opportunities for investigators from various disciplines to collaborate across disease programs with the Dana-Farber Harvard Cancer Center. The aims for this project are to adapt and implement a systems-level tobacco treatment intervention within the Lung Center at Brigham and Women’s Hospital, compare the effectiveness of the systems-level tobacco treatment intervention with usual care, and create a population-based tobacco use data base that can be integrated with a biological data-base for future studies.

    A Brief Behavioral Intervention for Dyspnea in Patients with Advanced Lung Cancer

    Principal Investigator: Mary Cooley, PhD, RN, FAAN (Site PI) (PI: Joseph Greer, PhD, Massachusetts General Hospital)
    Co-Investigators: Jennifer Temel, MD; Colleen Channick, MD; William Pirl, MD, MPH

    Dyspnea is a common symptom in patients with advanced lung cancer and is associated with worse quality of life and greater use of health care services. We designed a brief, nurse-delivered two-session behavioral intervention that focuses on skills for managing dyspnea including patient education, relaxation techniques, and behavioral strategies for acute dyspnea. The intervention improved patients’ dyspnea and quality of life in a single arm pilot study, and we are now testing the intervention versus usual care in a randomized trial (N=200) at Massachusetts General Hospital and Dana-Farber. Participants complete study questionnaires at baseline and every 8 weeks for 6 months as well as wear a wrist actigraph for 3 days at baseline and post-intervention. Outcomes in the study include dyspnea, functional status, and quality of life.

    Reduction of Post Mastectomy Pain with the Jacki® Recovery Jacket: Randomized Trial

    Primary Investigator: Donna Berry, PhD, RN, FAAN
    Co-Investigators: Michele McCullough, RN; Samantha Morrison-Ma, MSN

    Patients have mastectomy either in treatment for breast cancer or as prophylaxis, and may have reconstructive surgery at the same time. After surgery, patients often experience discomfort from not only the surgical incisions, but also from the drainage tubes inserted at the incision sites. The tubes and drainage receptacles are often difficult to manage when patients are discharged from the hospital, wearing typical clothing and returning to regular daily activities. Post-operative pain can contribute to limited range of motion in the upper body, resulting in worsening stiffness and edema that have a negative impact on quality of life (QOL) and activities of daily living (ADL). This randomized trial tests usual care post-operative pain management and clothing (e.g., surgical bras and camisoles) versus the Jacki® recovery jacket, a loose-fitting jacket with drain pockets and access points for follow-up medical care, for their effect on patients’ pain intensity and interference, breast symptoms, and health related quality of life.

    myCare2 Supporting Caregivers and Caregiving

    Principal Investigator: Donna Berry, PhD, RN, FAAN (Site PI)
    Funding: National Cancer Institute, SBIR Bright Outcomes (Haas, PI)

    Cancer caregivers are often not included as central by the health care team to the management of patients, yet are most responsible at home. We have leveraged conceptual features of the ESRA-C system and features of BrightOutcome’s SymptomCareAnywhere and MyCaringCircle systems to create a new system, myCare2, that aims to meet the needs of individuals who care for cancer patients. The DFCI clinical site has conducted all focus groups and individual interviews to develop the prototype application.

    Evaluating a Clinician Support Algorithm to Enhance Implementation of Evidence-Based Chemotherapy-Induced Peripheral Neuropathy Assessment and Management Recommendations

    Principal Investigator: Robert Knoerl, PhD, RN
    Co-Investigators: Jennifer Ligibel, MD; Kaitlen Reyes, DNP; Nadine McCleary, MD; Donna Berry, PhD, RN, AOCN, FAAN (mentor)
    Funding: Mittleman Family Fund

    Chemotherapy-induced peripheral neuropathy (CIPN) is a common toxicity of neurotoxic cancer treatment that may affect up to 68 percent of patients during and in the subsequent months following treatment. It is characterized by numbness, tingling, and neuropathic pain in the extremities. Unmanaged CIPN symptoms may result in increased health care expenses, falls, and reductions in neurotoxic chemotherapy dose. Yet, CIPN symptoms remain inadequately assessed and managed in clinical practice. Novel interventions are needed that increase the early identification and management of CIPN symptoms to prevent the resulting negative effects of unmanaged CIPN symptoms on patient outcomes. Thus, the purpose of this study is to test the efficacy of a CIPN assessment and management algorithm to promote the implementation of evidence-based CIPN assessment and management recommendations in clinicians caring for patients receiving neurotoxic chemotherapy. This study employs a prospective, two-phase, pre/post-test design. We will prospectively recruit 142 patients beginning neurotoxic chemotherapy (71 Usual Care (UC) Period; 71 CIPN Algorithm Period (A-CIPN)) and 50 clinicians providing care to these patients at Dana Farber Cancer Institute. In the UC phase, patient participants will complete a battery of CIPN patient reported outcome measures over three clinical visits. In the A-CIPN phase, a separate cohort of patients will be recruited and will complete the same battery of CIPN patient reported outcome measures over three clinical visits. However, in the A-CIPN phase, clinicians will use the CIPN assessment and management algorithm to guide their assessment and management of CIPN during the visits. Clinician documentation of CIPN assessment and management will be compared between the two study phases. The long-term goal of this research is to decrease patient suffering by addressing the critical need for improved clinical systems to facilitate increased CIPN assessment and management in practice.

    Completed Studies

    The Experience of Living with Inherited Pancreatic Cancer Risk and Undergoing Pancreatic Cancer Screening

    Principal Investigator: Meghan L. Underhill, PhD, RN
    Co-Investigators: Sapna Syngal, MD, MPH; Emily Brown, MS, LGC; Anu Chittenden, MS, LGC; Monica Dandipani, MS, LGC; Chinedu Ukaegbu, MBBS, MPH; Denisa Paris; Rhonda Grealish, RN; Donna Berry, PhD, RN, AOCN, FAAN (mentor)

    There is a subpopulation of persons living with high risk for pancreatic cancer due to hereditary or familial factors. Though it is known that identifying pancreatic cancer at an earlier stage can lead to improved surgical treatment outcomes, no standard of care exists to guide clinicians with surveillance or prevention. The Dana Farber Cancer Institute (DFCI) Gastrointestinal (GI) Genetics and Cancer Prevention Program is testing mechanisms to identify and screen individuals at high risk for pancreatic cancer. Aims are to: (a) Understand the meaning of living with awareness of high risk for inherited or familial pancreatic cancer; and (b) explore experiences associated with pancreatic screening as part of a comprehensive cancer prevention program. This study is a descriptive, cross-sectional study design guided by a qualitative phenomenological approach. A convenience sample will be recruited from the DFCI GI Cancer Prevention Program. Eligible participants will meet criteria to undergoing pancreatic cancer screening based on personal and family cancer history and have no history of pancreatic cancer. An open ended one on one interview will be completed with each participant by the nurse researcher. Analysis will be lead by the nurse research and will utilize a content analysis method to identify patterns, consistencies and differences noted throughout the interviews. This study will guide future nursing research and practice by guiding the development of patient oriented nursing and health care provider interventions aimed at improving the experience of individuals undergoing pancreatic cancer detection and risk identification.

    Enhancing Usability of the Personal Patient Profile-Prostate (P3P) for Black and Spanish-speaking Men

    Principal Investigator: Donna L. Berry, PhD, RN, AOCN, FAAN
    Co-Investigators: Julia Wetmore-Hayes, MD (DFCI); Martin Sanda, MD (BIDMC/Emory); Peter Chang, MD (BIDMC); Seth Wolpin, PhD, RN (University of Washington)

    This study is funded by the A. David Mazzone Research Awards Program. Localized prostate cancer (LPC) can be treated with one or more of several modalities including active surveillance, surgery, cryosurgery, brachytherapy, external beam radiation therapy or androgen deprivation therapy. There are few findings from randomized trials of these treatment modalities in North American settings that adequately compare survival or adverse outcomes such as erectile, bladder, and bowel dysfunction. There is a growing body of evidence that men with a recent diagnosis of LPC engage in the treatment decision making process by strongly considering their personal characteristics and factors along with medical factors. The incidence of prostate cancer is higher in Black men in the United States than any other ethnic or racial group, plus death rates are disproportionately higher for these men. While there are few factors to explain these discrepancies, certainly Black men carry an additional burden when making treatment decisions. Hispanics are the fastest-growing minority group in the US. According to the 2009 Healthcare Disparities Report, Hispanic adults reported worse provider-patient communication than non-Hispanic Whites, likely creating barriers to informed and shared LPC treatment decision making. The aim is to improve the a) ethnic and racial sensitivity and applicability; and b) linguistic, technical and contextual appropriateness of P3P content and measures.

    Personal Patient Profile-Prostate: Testing and Implementation in Health Networks

    Principal Investigator: Donna L. Berry, PhD, RN, AOCN, FAAN
    Co-Investigators: Julia Hayes, MD (DFCI); Fangxin Hong, PhD (DFCI); Seth Wolpin, PhD, RN (U. Washington); Leslie Wilson, PhD (UCSF), Steven Canfield, MD (University of Texas Health Science Center at Houston); Gary Chien, MD (Kaiser Permanente), Martin Sanda, MD (Emory University); Peter Chang, MD (Beth Israel Deaconess Medical Center)

    This is a federally funded grant: R01NR009692. The P3P is the first automated and tailored intervention for men with localized prostate cancer (LPC) to demonstrate efficacy in a U.S. sample. We have evidence that the P3P decreases decisional conflict; men are able to, in their words, “choose the best treatment for me.” Yet as with many decision support technologies and interventions, deployment as an integral component of cancer clinical care has not been established, notably with regard to feasibility as routine practice and to costs. LPC can be treated with one or more modalities including observation alone, surgery, cryosurgery, hormonal therapy, brachytherapy, or external beam radiation therapy. There are few findings from randomized studies of these treatment modalities in North American settings that adequately compare the complications of sexual, bladder, and bowel dysfunction. For many years to come, men will hear clinician recommendations but also will be asked to make major choices about prostate cancer treatments. These decisions can dramatically change men’s lives. The purpose of this hybrid effectiveness-implementation study is to deploy and evaluate an efficacious, patient-centered, treatment decision technology in geographically, ethnically and racially diverse health care settings as a means to support men with newly diagnosed LPC. We will collect resource costs associated with preparation for the treatment decision using the P3P program versus standard practice. Metrics associated with viability of P3P implementation will be collected in each of three health network settings which serve a diverse population of men with prostate cancer.

    Feasibility and Acceptability of a Lifestyle Intervention for Patients Receiving Surgical Treatment for Lung Cancer (Healthy Directions After Lung Cancer Pilot)

    Principal Investigator: Mary E. Cooley, PhD, RN
    Co-Investigators: Karen Emmons, PhD (DFCI), Christopher Lathan, MD (DFCI), Paul Marcoux, MD (DFCI), Fangxin Hong, PhD (DFCI), Dawn L. DeMeo, MD, PhD (BWH), Laura L . Hayman , PhD, RN (UMB); Raphael Bueno, MD (BWH)

    The objective of this proposal is to test the feasibility and acceptability of a multi-risk factor lifestyle intervention for patients with lung cancer receiving surgical treatment that focuses on exploring the individuals’ meaning of illness and their wellness vision, improving symptom control, reducing lifestyle risk factors, increasing motivation to reduce risk factors, improving self efficacy, and providing social support during the transition from acute care to the recovery phase of illness. This study will provide the preliminary data needed to conduct a larger randomized controlled trial that tests an innovative, multidisciplinary intervention that has the potential to transform the standard of care for patients receiving surgical treatment for lung cancer. In addition, we will establish whether patients are willing to have blood collected at baseline and 4 month to assess the variability of longitudinal changes in DNA methylation with multiple behavioral risk scores. Patients will have the option to enroll in this portion of the study. Participation in this portion of the protocol is voluntary and does not preclude participating in the parent study.

    Decision Support for Symptom and Quality of Life Management

    Principal Investigator: Mary E. Cooley, PhD, RN
    Co-Investigators: Janet Abrahm , MD (DFCI); Donna Berry, PhD (DFCI); Ilana Braun, MD (DFCI); Erica L. Mayer, MD (DFCI-Faulkner), Lauren Petrillo-DeLuca, PA (DFCI-Milford), Brendan McNulty, MD (DFCI-Milford), Naeem Tahir, MD (DFCI-Milford), Mona Kaddis, MD (DFCI-Milford); Michael Rabin, MD (DFCI)

    This study is funded by the Patient-Centered Outcomes Research Institute (PCORI). Optimal patient care and clinician decision-making requires integration of patient values, goals and preferences for care decisions surrounding treatment for cancer. Integration of patient-preferences for merging symptom and quality of life (SQL) information with medical outcomes (e.g., survival & tumor response) has not been thoroughly explored, especially in the context of treatment for cancer. Evidence exists that communication surrounding these critical values is not routinely integrated into care. Although 95% of patients with cancer reported that they valued quality of life as much as length of survival, only 28% reported that changes in quality of life during treatment for cancer were discussed with their clinicians. The use of decision support for SQL assessment and management may be an innovative way to enhance patient-engagement, facilitate communication and improve patient-desired outcomes. The proposed project builds on the work conducted by our team related to implementing decision support for SQL assessment and management into clinical care. We have conducted the first large-scale randomized trial to examine the impact of SQL assessment with feedback and patient coaching on patient-clinician communication and the first study to develop complex web-based decision support for management of pain, depression, anxiety, fatigue and dyspnea. We seek to adapt our approaches to new environments, which include community settings, and to optimize the delivery of SQL information. We have engaged a team composed of clinicians, patient advocates, nurse scientists, informaticists and clinical decision support experts. We will elicit patient and clinician preferences through focus group methodology in year 1. Based on this information, we will develop and test prototypes for SQL data provision and processing plus decision support strategies that can be used to enhance communication and management of SQL information.

    Exploring Treatment Decision Making in Patients with Bladder Cancer

    Principal Investigator: Donna Berry, PhD, RN, DFCI
    Co-Investigators: Jonathan Rosenberg, MD, Memorial Sloan-Kettering Cancer Center, New York, NY; Kevin Loughlin, MD, Brigham & Women’s Hospital, Boston, MA

    This study is funded by the DAISY Foundation. Bladder cancer is the fourth most common cancer in men in the United States and the 10th most common in women. Bladder cancer has the highest rate of recurrence of any malignancy (approximately 50% of patients have recurrence in the bladder) and as a consequence, is the most expensive of all solid tumors to treat. Despite this significant healthcare burden, current treatments for bladder cancer result in modest clinical benefit, frequent side effects and infrequent cure. Little is understood about how patients make decisions, shared or unshared with providers, for different treatments in bladder cancer. The purpose of the study is to describe aspects and process of treatment decision-making in individuals with bladder cancer using qualitative analysis of data from individual interviews Methods: 60 patients with a primary diagnosis of bladder cancer (any stage) will be identified and offered participation. Using a naturalistic inquiry approach, we will collect and analyze data in order to understand aspects of treatment decision-making on the part of patients with bladder cancer. The interviews will be semi-structured; with predetermined open ended questions. All interviews will be digitally recorded, transcribed and de-identified before analysis, and anonymous raw data will be entered into qualitative data analysis software. To analyze the interview data we will use the constant comparative method, a process of continuously refining the findings through coding and thematic analysis. A deliverable of the basic decision making process for bladder cancer will be articulated and serve as a foundation for supportive subsequent interventions.

    ESRA-C Spanish: Linguistic Appropriateness and Cultural Sensitivity

    Principal Investigator: Donna Berry, PhD, RN, DFCI
    Co-Investigators: Cindy Tofthagen, ARNP, PhD, University of South Florida, Tampa, FL

    This study is funded by the Oncology Nursing Foundation. The purpose and aim of this study is to develop a linguistically appropriate and culturally sensitive Spanish version of the Electronic Self Report Assessment-Center (ESRA-C) with input from Spanish speaking patients from a variety of Hispanic cultures. We will utilize a three-step approach to assessing linguistic appropriateness and cultural sensitivity by 1) holding focus groups with patients and family caregivers to elicit information about the readability and cultural sensitivity of ESRA-C Spanish; 2) assessing cultural sensitivity of ESRA-C Spanish using the Cultural Sensitivity Assessment Toolkit 9CSAT), a tool that has been used with Hispanic populations and applied to cancer websites; and 3) employing the Fry formula to target a 6th-grade reading level recommended for patient education materials in cancer care setting.

    Support Needs of Women with Deleterious BRCA1/2 Gene Mutations

    Principal Investigator: Meghan Underhill PhD, RN
    Co-Investigators: Cheryl Crotser PhD, RN (Roberts Wesleyan)

    This study is a secondary qualitative data analysis of 23 interviews from women with deleterious BRCA1 or BRCA2 gene mutations. The goals of this project were to describe health communication and decision support needs in healthy women with deleterious BRCA1 or BRCA2 gene mutations. Findings will guide future research questions and decision support intervention development.

    Individual, Disease, Work-related Factors, and Sick Pay Policy and Their Association with Work Patterns and Presenteeism of the Colorectal Cancer Patient After Treatment

    Principal Investigator: Kristin Roper, RN, PhD (c)

    The major purpose of this descriptive study is to understand and explain physical, psychological, and functional outcomes related to work patterns and presenteeism of colorectal cancer survivors after treatment. Presenteeism is defined as productivity loss on the job due to real health problems that can create work-related barriers for the re-entry or continued gainful employment for the colorectal cancer survivor. The collection of preliminary data will guide and inform the development of an educational intervention for colorectal cancer patients adjusting to or continuing employment after treatment of cancer. Reported predictors of work patterns and presenteeism will be examined including individual related factors such as age, gender, race, marital status, education, health related quality of life, and depression in the colorectal cancer survivor. Other predictors such as disease and work-related factors that have shown to affect patterns of return to work or continued employment and presenteeism will be examined including disease stage, type of treatment, time since diagnosis, occupation, company size, sick pay use, and health insurance status.

    A Lung Cancer Symptom Assessment and Management Intervention (SAMI)

    Principal Investigator: Mary E. Cooley, PhD, RN
    Co-Investigators: Janet Abrahm, Karen Emmons, Joanne Wolfe, Donna Berry (DFCI); David Harrington (Biostatistics, DFCI); Ken Zaner, Gail Wilkes (Boston Medical Center); David Lobach, Guilherme Del Fiol (Duke University)

    This study, funded by the National Cancer Institute (R01 CA125256), will develop and evaluate the usability (in phase I) and feasibility in clinical use (in phase II) of a coordinated symptom assessment and management intervention for lung cancer patients. The intervention utilizes patient reports of symptoms and prior adherence to treatment, lab values, and standards-based clinical guidelines to generate patient-specific recommendations for symptom management. The intervention will be tested for its effects on patient-health care provider (HCP) communication, clinical management of symptoms, and health-related quality of life. The study will be conducted in two sites, Dana-Farber and Boston Medical Center, and will enroll 10 HCPs and 12 patients in phase I (2009), and 18 HCPs and 180 patients in phase II (2010-11).

    Personal Patient Profile-Prostate (P3P): A Randomized Multi-site Trial

    Principal Investigator: Donna Berry, PhD, RN, FAAN, AOCN®
    Co-Investigators: William Ellis, Kenneth Russell, Seth Wolpin, William Lober (University of Washington), Gerald Bennett (Georgia Health Sciences University), Andrea Barsevick (University of Pennsylvania), Greg Swanson

    Funded by the NINR (R01 NR009692), the purpose of this randomized study was to compare decisional conflict and satisfaction in men receiving the Personal Patient Profile - Prostate (P3P) and traditional patient education strategies. Sub-objectives include comparisons of decisional control shift, quality of life and resource utilization. An ethically and racially diverse sample of 494 men with localized prostate cancer who are preparing for a planned consult visit with a urologist and/or radiation oncologist in which treatment options were enrolled. A multi-site trial was conducted in geographically diverse locations in North America. The intervention was delivered in both clinician offices and at participants' homes. The program, developed by Berry and her colleagues while at the University of Washington in Seattle, is the first decision aid that customizes the decision making process by integrating influential personal factors. The system uses a touch screen computer and helps men clarify their personal factors, hear how patients like themselves talk to doctors about these factors and search for relevant information. The results of the study show that men experienced significantly lower conflict associated with decision making after using the P3P.

    Computerized Assessment for Patients with Cancer (ESRA-C II)

    Principal Investigator: Donna Berry, PhD, RN, FAAN, AOCN®
    Co-Investigators: Seth Wolpin, William Lober, Jesse Fann, Anthony Back, Dagmar Amtmann, Upendra Parvathaneni (University of Washington); Nigel Bush (Fred Hutchinson Cancer Research Center)

    Funded by the NINR (R01 NR008726), this study further develops the Electronic Self-Report Assessment for Cancer (ESRA-C), a Web tool patients use to self-report symptoms and quality of life issues (SQIs), which delivers summaries to the clinical care team. In a previous randomized trial, the ESRA-C intervention was successful in promoting patient-clinician communication of SQIs and their management. This study will test an enhanced, patient-focused intervention (ESRA-C 2) that provides patients: SQI tracking and graphing; educational information about SQI prevalence, etiology and management; and coaching on communicating SQI information to clinicians. Trial of the new patient-focused intervention (treatment arm) versus the existing clinician-focused intervention (usual care) will enroll 700 patients and 250 clinicians at Dana-Farber and Seattle Cancer Care Alliance/University of Washington Medical Center beginning in 2009.

    Differences in current health behaviors among African American and European American lung cancer patients and their families

    Principal Investigator: Mary E. Cooley PhD, RN and Laura Hayman PhD, RN, FAAN
    Co-Investigators: Paul Marcoux MD, Mark Powell MA, David Harrington PhD, Gail Wilkes MSN, Alexandra Shields PhD

    This multi-site pre-pilot study seeks to collect preliminary data needed to guide and inform the development of a family-based health promotion intervention for lung cancer patients and their families. The primary aim for the proposed research is to: 1) Identify differences in current health behaviors (diet, physical activity, and smoking) between African American and European American lung cancer patients and their families. Demographic, clinical, cognitive, psychosocial, behavioral, and health outcome variables will be collected once by phone interview or in person. A standardized questionnaire will guide the interview. This study will enroll 40 patients and 40 family members.