• Phyllis F. Cantor Center for Research in Nursing and Patient Care Services

    Current Research

    Ongoing Studies

    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.

    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.

    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.

    Completed Studies

    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.

    Mindfulness in Autologous/Stem cell Transplantation to Enhance Resiliency (MASTER)

    Principal Investigator: Susan Bauer-Wu, PhD, RN
    Co-Investigators: Mary E. Cooley, PhD, RN, APNC, Ann S. LaCasce, MD (Medical Oncology)

    This multi-site, randomized clinical trial (RCT) is aimed at examining the bio-behavioral effects of mindfulness meditation (MM) in cancer patients undergoing stem cell/autologous bone marrow transplantation (SCI/ABMT). A total of 270 patients will be randomized to one of three groups (1. mindfulness instruction by trained registered nurses; 2. nurse education/attention control; 3. standard care), and will be followed throughout SC/ABMT and until six months after discharge from the hospital. Outcomes include psychological and physical symptoms, quality of life, cardiovascular arousal, neuro-endocrine function, and transplant-related immune outcomes. Recruitment and data collection are underway.

    Dr. Allen is leading two pilot studies funded by the U56 Collaboration between the DF/HCC and the University of Massachusetts, Boston. A Comprehensive Needs Assessment of Boston's Haitian Community

    Co-Principal Investigator: Jennifer D. Allen, DSc, MPH, RN
    Co-Principal Investigator: Alix Cantave, PhD (UMB)

    Funded by the Dana-Farber Harvard Cancer Center U56 Initiative with the University of Massachusetts, Boston (UMB), this pilot study was designed to explore cancer prevention and control needs among Boston's Haitian community. Haitians represent the largest and fastest growing immigrant group in Boston. Yet, their needs with respect to cancer prevention and control go largely undocumented. This proposal represents a collaborative effort undertaken by an interdisciplinary group of investigators in the Center for Community-Based Research at the Dana-Farber Cancer Institute, the University of Massachusetts at Boston's Trotter Institute for the Study of Black Culture and History, the Haitian Multi Services Center, as well as an alliance of Haitian religious leaders in Boston. Overall goals of this proposal are to assess the cancer prevention and control needs of Haitians, with the goal of identifying service gaps and designing programs to address these areas. Two levels of intervention are planned: One, implemented by Peer Health Advisors, is designed to increase knowledge and utilization of screening tests among church members; the second will provide technical assistance to community organizations to improve their capacity to serve the Haitian community.

    Promoting Cancer Screening in Latino Churches

    Principal Investigator: Jennifer D. Allen, DSc, MPH, RN
    Co-Investigators: John Perez, PhD (UMB)

    The purpose of this pilot study, funded by the Dana-Farber/Harvard Cancer Center U56 UMB initiative, is to develop, implement, and pilot-test an intervention to promote cancer screening for breast, cervical, and colorectal cancer among low-income Latinos in faith-based settings. Working with a large Latino congregation in East Boston, we will train Peer Health Advisors to implement cancer screening interventions in their congregations. Using a quasi-experimental pre/post test evaluation design, we will collect data on intervention effects on screening behaviors. This study is a collaborative effort among the Center for Community-Based Research, the University of Massachusetts at Boston, and the Latino Health Insurance Program through the Boston University School of Public Health.

    Parental Attitudes toward the HPV (human papilloma virus) Vaccine

    Principal Investigator: Jennifer D. Allen, DSc, MPH, RN
    Co-Investigators: Marcela del Carmen, MD, MPH and Nancy Norman, MD, MPH

    This study was funded by the Dana-Farber Harvard Cancer Center Nodal Award to assess factors associated with acceptability of the HPV vaccine among parents. Availability of a prophylactic vaccine that protects against the main types of HPV associated with cervical cancer represents a significant step toward reducing the public health burden of HPV. However, mere availability will not ensure vaccine acceptance, and those most at risk for vaccine-preventable diseases are generally the least likely to obtain them. Further, since parental consent will be required for vaccination of children under the age of 18, parents are a central audience for HPV interventions, and more research is needed to understand parental acceptability of the HPV vaccine. The purpose of this study is to examine factors associated with vaccine acceptance among African American, Latino and White parents of a subset of girls who are age-eligible to receive the vaccine (9-18) with the goal of developing culturally appropriate interventions.

    Lymphoma Patients End of Treatment Transition

    Principal Investigator: Kristin Roper, MSN, ONC, RN (Radiation Oncology)
    Co-Investigators: Kecia Boyd, BSN, RN, OCN (Dana 1 Infusion), Christine Coakley, MPH, RN (Dana 1 Infusion), Kathleen McDermott, BSN, RN, OCN (Hematologic Malignancies), Mary Cooley, PhD, RN, and Jacqueline Fawcett, PhD, FAAN (UMass Boston)

    In this study, Kristen Roper, RN, MSN, OCN, Christine Coakley, RN, MPH, Kathleen McDermott, RN, and Keisha Boyd, BSN, RN, OCN, are examining the adaptation of patients with Hodgkin's disease (HD) following treatment. This descriptive, longitudinal study focuses on the adaptation of HD patients by describing individual physical symptoms, emotional distress, intimate relationships, and functional status during, at the end of, and after cancer treatment. Another specific aim of this exploratory study includes the identification of the types of supportive care services used by this patient population. Such a study is central to developing effective clinical interventions to enhance HD patients' adaptation after treatment. During the course of this research a review of studies examining the QOL of both younger and older adults with HD was presented as a podium presentation at the 8th annual Conference on Cancer Nursing Research in 2004. This abstract has also been accepted as a poster presentation at the Annual Boston Area Cancer Survivorship Research Meeting in October 2006, as well as an abstract entitled "Lessons Learned in the Recruitment and Retention of Young Adult Cancer Survivors in a Longitudinal Clinical Trial." Dissemination of the findings of this study will begin the summer of 2007 . This research team of clinical nurses has been closely mentored by Dr. Cooley and Jacqueline Fawcet, PhD, RN, FAAN (Cantor Center associate clinical scientist), which has enabled them to secure funding from the national Oncology Nursing Society and the Friends of Dana-Farber. Preliminary findings were presented at the National Conference for Cancer Nursing Research in February 2007. A manuscript of the results is currently in development.

    The Experience of Living with Metastatic Breast Cancer: Insight Gained from Women's Expressive Writing

    Principal Investigator: Susan Bauer-Wu, PhD, RN
    Co-Investigators: Marsha Fonteyn, PhD, RN, OCN, Peggy Vettese, PhD, RN, Diane Lancaster, PhD, RN, Ann-Marie Barron, PhD, RN, CS, Carolyn Hayes, PhD, RN, Ulrika Kreicbergs, PhD, RN

    Background: Writing deeply about the issues and concerns of living with advanced breast cancer can be a therapeutic and cathartic process for the individuals undergoing this experience. Additionally, the content of their writing can assist healthcare providers and researchers to better understand the nature of this process and the dimension of thoughts and feelings associated with this experience. The purpose of this study was to identify and describe the content of the expressive writing texts of a group of women who were living with metastatic breast cancer.

    Sample and Methods: A secondary analysis using qualitative research methods was conducted by a team of nurse scientists examining the transcripts of 85 women with Stage IV breast cancer who participated in an expressive writing intervention study. The participants in the original study had given informed consent for a subsequent analysis of their expressive writing texts, which were transcribed verbatim prior to the content analysis. To help ensure intercoder reliability, the team first developed a comprehensive codebook, interactively, by reaching consensus on the concepts identified in a set of transcripts that all team members had analyzed. The codebook that was ultimately developed contained the concepts (codes), definitions, inclusion and exclusion criteria, and exemplar text. The team then divided up the transcripts and individually conducted their analysis, using the codebook as a guide. Periodic team meetings were held to discuss and resolve any issues associated with the codebook and to identify and describe any new concepts that needed to be added. The QRS? NVivo software program was used to maintain an electronic database of the coded transcripts.

    Findings: A total of 22 concepts were identified, which illustrate the scope of the experience of living with advanced stage breast cancer. Those that predominated were: Impact of Cancer, Coping, Relationships, Living with Dying and Loss.

    Among other concepts identified were: Self-Perception, Self-Transcendence, Questioning, Hopes, Cause, Decisions, Comparisons and Metaphors for Cancer.

    Conclusion: The development of a codebook helped facilitate our team's accurate analysis of this large data set of expressive writing transcripts. Our description of the focus of participants' thoughts and feelings when writing deeply provides a beginning description of the experience of living with advanced breast cancer that can be used to guide future research and promote an empathetic understanding of women who are undergoing this process.

    The codebook methodology was presented at the 8th National Conference on Cancer Nursing Research, held in Ft. Lauderdale, FL, February, 2005 and published in 2008: Fonteyn, ME, Vettese, M, Lancaster, DR, Bauer-Wu, S. Appl. Nurs Res. 2008 Aug;21(3):165-8. A manuscript of the study findings is in review.

    Prevalence and Correlates of Smoking Behaviors in Adults with Cancer

    Principal Investigator: Mary E. Cooley, PhD, RN
    Co-Investigators: Karen Emmons, PhD (Population Sciences), Arthur Garvey, PhD (Harvard School of Dental Medicine), Bruce Johnson, MD (Thoracic Oncology), Jean Lukanich, MD (Thoracic Surgery, Brigham and Women's Hospital), Robert Haddad, MD (Head and Neck Oncology), Marshall Posner, MD (Head and Neck Oncology)

    The objectives of the current study are to identify point prevalence and continued abstinence rates among adult smokers with lung and head and neck cancers, and identify factors related to relapse among smokers with cancer. The results from this research will provide information needed to develop interventions and to target those who need more intensive smoking cessation interventions. Recruitment and data collection are finished. Time 1 data analysis has been completed and longitudinal data analyses are underway.

    A Feasibility Study Comparing Two Methods of Port-a-Cath Access in the Pediatric Oncology Patient

    Principal Investigator: Ann Deady, MS, RN, NP (Jimmy Fund Clinic)
    Co-Investigators: Susan Bauer-Wu, PhD, RN, Martha Healey, MSN, FNP, Deb Yokoe, MD (Infectious Disease), Kristen Graham, RN, BSN (Jimmy Fund Clinic)

    The objectives of this pilot study are to access feasibility and to compare outcomes of two implantable venous access techniques, sterile versus clean, in a small sample (N=42) of pediatric oncology patients undergoing active treatment. Outcome measures will be infection rate, time and cost. Dr. Bauer-Wu served as a co-investigator and mentor to Jimmy Fund Clinic Nurse Ann Deady in this exploratory study funded by the Friends of DFCI. The study is complete and results were presented at APHON in October 2007.

    Evaluation of the Clinical Trials Video on the Patient's Experience of the Informed Consent Process

    Principal Investigator: Susan Hitchcock-Bryan, RN, MPH (Medical Oncology)
    Co-Investigators: Susan Bauer-Wu, PhD, RN, Steven Joffe, MD, MPH (Pediatric Oncology), Christina Parker, MD (Office of Research), Andrew Wolanski, NP (Medical Oncology), Mark Powell (Biostatistics & Computational Biology)

    The study evaluates the audiovisual program — "Entering a Clinical Trial: Is it Right for You?" — to determine whether the program dispels patients' misconceptions about clinical trials. This study assessed the impact of viewing the video on patients' understanding of clinical trials and how that understanding contributes to the informed consent process. The study was completed in 2006 and the results were presented at the National Conference for Cancer Nursing Research in February 2007. The poster was awarded a second place ribbon among all presenters.

    Expressive Writing for Young Women with Newly Diagnosed Breast Cancer

    Principal Investigator: Susan Bauer-Wu, PhD, RN
    Co-Investigators: Ann Partridge, MD, and Anne Elperin, MS, NP (Women's Cancers); Lidia Schapira, MD, and Mary Artery, MS, NP (Massachusetts General Hospital [MGH])

    Funded by the CALGB Foundation, this two-site (Dana-Farber and Massachusetts General Hospital [MGH]) pilot study prospectively evaluates the feasibility and estimated effect size of participation in a four-month expressive writing intervention (Web based or handwritten) in young women who are receiving systemic adjuvant therapy for breast cancer (N=90). The study is complete and plans are underway to disseminate the results.

    Activities of Daily Living in Women with Metastatic Breast Cancer

    Dr. Bauer-Wu, Susan DeSanto-Madeya, PhD, RN, of the University of Massachusetts Boston, and Abigail Gross, BA, of the Cantor Center, conducted a secondary analysis of activity logs written by women with metastatic breast cancer. These activity logs were kept over four days per participant (n=90) as the control writing for the parent study described previously. This data analysis provides insight into the level and extent of activities done by women living with advanced breast cancer.

    The study was presented at the Oncology Nursing Society Congress in May 2006, and results of the study were published in Oncology Nursing Forum 2007.

    Symptoms in Post-Surgical Lung Cancer Patients

    Dr. Mary E. Cooley, together with Linda Sarna, RN, PhD, from the University of California, Los Angeles, and Jeanne Lukanich, MD, Raphael Bueno, MD, and Michael Jaklitsch, MD, of the Division of Thoracic Surgery at Brigham and Women's Hospital are collaborating on this multi-site study. The overall goal of this project is to determine the profile and characteristics of symptoms of patients who have had surgery for non-small cell lung cancer. The specific aims for this study are to:

    • Determine the prevalence and trajectory of symptoms and symptom clusters experienced during recovery from treatment,
    • Determine demographic, health status, and disease/treatment predictors of the symptom recovery experience,
    • Determine the relationship of the symptom experience trajectory to perceptions of quality of life,
    • Describe the linkage between types of self-care management strategies for individual symptoms and for symptom clusters, and
    • Compare the symptom profile and self-care management strategies used by men and women. Recruitment and data collection and data analysis are complete.

    The results of the study were published in the American Journal of Critical Care 2008.

    Tobacco Use in Women with Lung Cancer

    Dr. Mary E. Cooley, together with Linda Sarna PhD, RN, from University of California, Los Angeles Jean Brown PhD, RN from University at Buffalo, State University of New York, Cynthia Chernecky PhD, RN, from Medical College of Georgia, and Roma Williams PhD, RN, formerly from University of Alabama, Birmingham, conducted a secondary analysis using data from 230 women with lung cancer. The purposes of this analysis were to determine smoking prevalence, describe patterns of smoking, identify readiness to quit and cessation strategies, identify factors associated with continued smoking among women with lung cancer, and determine smoking prevalence among household members. The mean age of the sample was 65 years, 84% were Caucasian, 11% were African American, and 81% had early stage disease. The mean time since diagnosis was 2 years. Data were collected through reliable and valid standardized questionnaires and interviews, medical record review, and anthropometrics. Current smoking was determined through self-report and biochemical verification with urinary continence. Descriptive statistics, chi-square and t-tests were used for analyses.

    Results from this study revealed that 87% of women reported ever smoking and 37% reported smoking at the time of their diagnosis. Ten percent of women were smoking at entry to the study, 13% were smoking at 3 months and 11% at 6 months. Fifty-five percent of smokers planned a quit attempt within the next month. One-third of smokers received cessation assistance at diagnosis, and pharmacotherapy was the most common strategy. Significant factors associated with continued smoking included younger age, depression, and household member smoking. Continued smoking among household members was 21%. Twelve percent of household members changed their smoking behavior; 77% quit smoking but 13% started smoking. These findings suggest that the diagnosis of cancer is a strong motivator for behavioral change and some patients need additional support in order to quit smoking. Family members should also be targeted for cessation interventions. The results of this study were published in Annals of Behavioral Medicine 2007.

    Gender Differences in Smoking Relapse

    Dr. Mary E. Cooley, Dr. Arthur Garvey and colleagues Mark Powell, Emily Blood and Randy Hoskinson have completed a secondary analysis using data from 608 participants. The purposes of this study were to examine whether pre-cessation and post-quit-day-1 (D1) biopsychosocial and behavioral factors associated with smoking relapse differed among men and women, and to examine potential differences in self-reported reasons for SR. Salivary cotinine was used to confirm smoking abstinence. Descriptive statistics, chi-square, and time-to-event analysis were performed. Controlling for nicotine replacement gum dose, pre-cessation factors associated with time-to-relapse among men were higher social stress and partner smoking, whereas women with higher financial stress and higher temptation to smoke in positive affect situations were at greater risk for smoking relapse. In a combined model, only the effect of being tempted to smoke in positive affect situations appeared to be different in time-to-relapse among men and women. Controlling for nicotine gum dose, the only D1 factor associated with time-to-relapse in men was having a higher temptation to smoke in negative affect situations. For women, having lower motivation, lower temptation to smoke in negative-affect situations, and higher temptation to smoke in habitual-craving situations were associated with greater risk of smoking relapse. In a combined model, the effects of being tempted to smoke in negative-affect and habitual-craving situations appeared to be significantly different among men and women. Analysis of self-reported reasons for early smoking relapse showed 24% of women and 37% of men identified smoking out of habit as the reason for smoking relapse. Another 24% of women identified negative affect as the reason for smoking relapse as compared to 14% of men. Results suggest that factors associated with smoking relapse may differ among men and women. An important finding is that women may underestimate the effect of negative affect on their risk of smoking relapse. Thus, interventions that focus on helping women to anticipate and deal with negative affect situations during smoking cessation attempts may help increase long-term abstinence rates. Results from this study were presented at national conferences and a manuscript is under review.

    Music Therapy for Women With Metastatic Breast Cancer

    Co-Principal Investigators: Susan Bauer-Wu, PhD, RN and Suzanne Hanser, EdD, MT-BC (Cantor Center Associate, Berklee College of Music and the Zakim Center for Integrated Therapies)
    Co-Investigator: Craig Bunnell, MD (Women's Cancers)

    This randomized, two-group study was aimed at improving quality of life and stress-related outcomes in women with metastatic breast cancer through the use of music therapy. The music therapy program consisted of three individual 45-minute sessions with a music therapist and listening to music every day over the course of the nine weeks. During the sessions participants learned simple techniques to enhance mood and relaxation through music. Findings from this study, which were published in the Journal of the Society for Integrative Oncology (Vol. 4, Number 3, Summer 2006), revealed significant improvements on immediate measures of anxiety, mood, and comfort as well as lowered heart rate after that music therapy sessions, although no statistically significant differences between the music therapy and control groups on the over-time measures. Qualitative data strongly demonstrates the value of music therapy for some of the participants. The findings were presented at the National Conference for Cancer Nursing Research in 2005.

    Presentations Given at the Biannual National Nursing Research Conference: State of the Science of and Alignment with Research Priorities

    Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
    Co-Investigators: Patrizia Lannen, PhD, Hailun Le and Donna Berry, PhD, RN, AOCN®, FAAN

    The Oncology Nursing Society research agenda priorities are determined through a consensus-building process that incorporates stakeholder and expert opinion to identify the gaps in scientific knowledge needed to guide current oncology nursing practice. These areas become the research priorities in the ONS Research Agenda that are published on the ONS Web site every four years. A logical assumption is that the majority of the research findings that are presented at the ONS National Conference of Cancer Nursing Research would be focused on one or more of these research priorities and that the level of evidence of this research would be consistently increasing. These assumptions are being tested through this study.

    All presentation abstracts (poster and podium) given at the National Conference on Cancer Nursing Research from 2003-2007 were categorized by the level of evidence produced by the study findings (based on the ONS continuum of levels of evidence) and by fit with one or more of the ONS research priorities. Study findings have been analyzed and will be presented at the National Conference for Cancer Nursing Research in February 2009.

    Fate of Presentations at the Oncology Nursing Society (ONS) National Conference for Cancer Nursing Research: Rate and Type of Subsequent Publications

    Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
    Co-Investigators: Patrizia Lannen, PhD , Hailun Le and Donna Berry, PhD, RN, AOCN®, FAAN

    Research presented at scientific meetings is not widely or readily available to clinicians unless it is published in a professional journal. Failure to publish a full-text article after presenting at a meeting is a limitation to evidence-based practice. A clearer description of the extent of this problem in oncology nursing research is needed before interventions can be developed to address any need for improvement. The purpose of this study is to provide a full description of the pattern of the full-text publication of presentations given at the ONS National Conference on Cancer Nursing Research) and to identify and describe areas for improvement in the wider dissemination of presentations through publication in professional journals.

    A search was conducted in Pub Med and CINAL to locate all full-text publications of the research presented (as either poster and podium) at the 7th (2003) and 8th (2005) National Conference for Cancer Nursing Research. A variety of categories were used to describe the full-text dissemination, including rate of publication, time to publication; type and referee process of journals identified, whether interdisciplinary and impact factor.

    Findings from this study will be presented at the 10th National Conference on Cancer Nursing Research, Orlando, FL, February 2009.

    Assessment of Adult Cancer Patient Issues Associated with Oral Chemotherapy Adherence

    Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
    Co-Investigators: Anne Gross, MS, RN, CNNA and Leslie Spencer, RN

    Oral Chemotherapy is increasingly being prescribed to many oncology patients, yet the range of problems and issues associated with adherence to this type of therapy have yet to be fully described and interventions are still being developed and tested. This study focused on the development of a survey instrument to identify and describe patient issues and concerns associated with their adherence to oral chemotherapy. It is hoped that the findings from this study will provide a preliminary description of the issues associated with adult patients' adherence to oral chemotherapy. Participants complete the anonymous self-administered survey during their regularly scheduled appointment. The 24-item questionnaire will provide information about three broad areas: medication teaching, management, and procurement; as well as general demographic data.

    Thus far, the survey is proving to be useful and feasible; taking less than 20 minutes for patients to complete with minimal occurrences of incomplete answers. Surprisingly, participants are reporting that they rarely skip or miss even one dose The survey has identified several areas of concern; most notably: that participants are experiencing multiple side effects from the medication and are having some difficulty obtaining and paying for oral chemotherapy prescriptions at commercial pharmacies. Our findings will contribute to the growing body of knowledge about issues associated with patients' adherence to oral chemotherapy. Our survey tool would be useful to oncology nurses from a variety of practice settings who care for patients receiving oral chemotherapy.

    Details about this project were presented at the Oncology Nursing Society Congress held in May 2008.

    A manuscript is in development.

    Assessment of Current Nursing Practice Associated With Oral Chemotherapy Adherence

    Principal Investigator: Marsha Fonteyn, PhD, RN, OCN
    Co-Investigators: Anne Gross, MS, RN, CNNA, Leslie Spencer, RN, Karen Schulte, MSN, NP, RN, Terry Mazeika, RN and Elizabeth Tracey, PhD, RN

    Although the number of patients who are prescribed oral chemotherapy has been steadily increasing, there are not yet established practice standards for the care of these patients. The purpose of this study was to identify and describe the current nursing practice of the direct care RNs at our ambulatory care cancer center associated with caring for patients receiving oral chemotherapy. All direct care DFCI nurses were sent an email inviting them to participate by completing an anonymous web-based survey. The survey instrument was developed from information that was obtained by holding a series of focus groups where subsets of RNs (representing the various direct care roles at our institution) were interviewed about their current practice associated with caring for patients receiving oral chemotherapy. The data was collected through a web-based survey and analyzed using descriptive statistics. Findings from this study contribute to the development of best practice standards at our facility, to facilitate and support patients' adherence to oral chemotherapy and will add to the growing body of knowledge about oncology nursing practice associated with patients' adherence to oral chemotherapy.

    Findings from this study were presented at the Oncology Nursing Society Congress held in May 2008.

    A manuscript is in development.

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